World Cancer Day

Today is World Cancer Day. 

The day is promoted by the Union for International Cancer Control, and was created to "raise awareness about cancer, encourage its prevention, and mobilize action to address the global cancer epidemic."

This year's theme is "United by Unique." It is meant to highlight that each of us has a different experience with cancer, but we also share some common feelings, experiences, and goals. We are encouraged to tell our stories. I am a big believer in this -- when we tell our stories, and listen to one another, we really see just how unique each of us is, but we also see just how much we share at the same time. 

So I join the UICC in encouraging you to find ways to share your story. Share with individual you know, with people who ask questions. Share it online, in support groups with other patients. Share it on the World Cancer Day website. Share it here.

The more we hear about others' experiences, the more we learn, and the less alone we feel. 

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

Now, I have another personal request of you. Educate yourself.

This seems like as good a day as any to share an article and make the request.

Last week, the Journal of the American Medical Association published an article called "Understanding of Clinical Trials Among Patients With Cancer and Their Relatives." The article described the results of a survey of 578 cancer patients and 382 of their relatives, asking about their knowledge of clinical trials. 

About 18% of the survey takers had already participated in a clinical trial, and about 44% said they were willing to participate in one. Those who called themselves knowledgeable about trials were much more likely to participate than those who were not knowledgeable. Reasons for participating included potential health benefits and access to new treatments. Reasons for being reluctant included potential side effects, feeling like a “test subject,” and the risk of "getting a placebo." 

I understand that last one, because I had that discussion with my own mom when she was being treated for cancer, and she had this concern. Too many people think the word "placebo" means "sugar pill." In other words, they believe incorrectly that in a clinical trial, half of the patients get the new treatment being tested, and half get a "fake" treatment. That is not how a cancer trial works, of course -- no researchers would be allowed to (or would want to) keep treatment from a patient. In a double blind trial, where two treatments are being compared (and not every trial is set up this way), the new treatment is given to half of patients, and the other half received the "standard of care" -- the treatment that the would have received anyway if they didn't participate in the trial.

That "placebo" language is loaded. It might be accurate, but it has too many negative meanings for too many patients. And the people who use it should know better than t use it, but that isn't always the case. A couple of years ago, I did some work advising a pharmaceutical company about the patient materials they were writing. One of the documents was about a clinical trial they were conducting, and they kept using the word "placebo." I advised them to change that to "standard of care." It's a little more accurate and a lot less negative for a cancer patient to hear. Using it would only keep some potential trial participants from being a part of it.

Clinical trials are much too important to all of us to have a single word keep people away from them. They may help the individuals who participate in them, but they help all of us by moving treatments forward so they can eventually be approved. (Or they can be shown to not be effective, and  that's just as valuable.)

But all of that requires some education. We need to understand how a trial works, what it includes, and what it doesn't include. And that takes some effort.

So on this World Cancer Day, tell your story. But also make a vow to learn as much as you can about your disease. That bit of education might now just help yourself - it might help all of us.

Also, on this World Cancer Day, do something to treat yourself. I'm going to have a big bowl of ice cream We've all earned it.

CAR-T for FL in Europe

A quick post today:

News came out last week that the Committee for Medicinal Products for Human Use (CHMP) of the European Medicines Agency (EMA) has recommended the approval of the CAR-T treatment Liso-cel (also known as Breyanzi) for treatment of patients with Relapsed or Refractory Follicular Lymphoma who have already received two or more treatments.

This is great news. It potentially expands treatment options for R/R FL patients. The European Commission will review the recommendation and make a decision (it usually decides within two months). If it is approved, the CAR-T treatment will be available to patients with the European Union, as well as the European Economic Area countries Iceland, Norway and Liechtenstein.

Liso-cel has already been approved in the EU for a few types of lymphoma, including R/R Diffuse Large B Cell Lymphoma , high grade B Cell Lymphoma, and Grade 3B Follicular Lymphoma. This approval would greatly expand the number of patients who could receive the treatment. 

I'll keep an eye on the news of the final approval when it happens.

 

Secondary Cancer (Again)

A bit of personal news to share -- I received a skin cancer diagnosis yesterday. This is my second time. This seems like a good opportunity to talk about secondary cancers (again).

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

I see a dermatologist every six months or so. My oncologist urged me to do this a few years ago. Lymphoma patients, he said, have a higher risk of developing secondary cancers like skin cancers. It has to do with out "imperfect immune systems." 

My having had Rituxan all those years ago is another factor that increases my risk.

My fair skin, thanks to my Scottish heritage, means I got lots of sunburns as a child, and a few of them were severe. So that's a third risk factor.

Add all of that up, and it means I should pay particular attention to my skin.

Probably 5 or 6 years ago, I started noticing some scaly patches and bumps on my skin, especially on my scalp, forehead, and the backs of my hands. These are called Actinic Keratoses, or AKs. You can read about them here.

My dermatologist finds these every six months (or, more often, I find them and point them out to her), and she zaps them with liquid nitrogen and they go away. About a year and a half ago, I was diagnosed with Basal Cell Carcinoma, a common skin cancer. Had a lesion on my scalp.  Had Mohs surgery to have it removed. Took a handsome picture after the surgery. All good.

In September, I had a few AK's removed. One on my scalp started growing back after a while. (This is a different spot than the Basal Cell Carcinoma.) When the growing didn't slow down, I called the dermatologist for an appointment. Took a while to get in to see her, but when she took a look, and I told her it was growing back, she said she wanted to biopsy it. "If it's growing quickly, it might have turned into Squamous Cell Carcinoma." This is a different type of skin cancer -- even more common than the Basal Cell. An AK that is untreated can turn into Squamous Cell -- and that can happen even if it is treated, obviously.

She called yesterday morning. I was getting ready for work, and I didn't recognize the number, so I let it go to voicemail. I thought, "Who the heck is calling me this early?" And then I remembered I was waiting for a call about the biopsy.

The voicemail she left was something like "This is the dermatologist. We have some news about the biopsy. I'll try to get in touch again later."

Now, obviously, this was not good news, or she would have said "Everything looks fine. See you in six months." 

I told my wife about the voicemail, and the lack of good news in it. My wife, naturally, doesn't like it when people tell me that I have cancer. But she managed a small joke -- "Didn't give you the news in a voicemail? Little does she know that she's going to end up in the blog for that." My wife knows me well. It's all about generating content when you live your life online.

The dermatologist left two more voicemails before she caught me at a time when I could talk. As I'm writing this, I'm waiting for a call back from the surgery coordinator so we can set up a time to do the Mohs. 

A few things I want to focus on here.

First, I'm not very worried about this. If you hadn't noticed, I wasn't waiting anxiously for the call. Didn't even bother to pick it up the first time. Or the second and third times, for that matter. When she mentioned the possibility of Squamous Cell Carcinoma last week, I just assumed that I had it. (In fact, I filled out a survey this week about blood cancers, and when it asked if I'd been diagnosed with a secondary cancer, I said yes, which is true, but when it asked how recently, I said last week, not last year. I just knew. I've done this before.)

But I also have a bunch of you wonderful people to thank for my lack of worry. William, who is a caregiver for his wife, has told me that she has had several Basal Cell and Squamous Cell cancers removed. Shelly has had several melanomas removed. Ian has had "too many to mention." All of those comments could cause me to worry, but they did the opposite, which is what they were intended to do. For many FL patients, secondary skin cancers are just a fact of life. I don't like it, I wish it was different, but here we are.

Second, because they are a common feature of survivorship for many of us, it's a good reminder that having lymphoma, and having treatment for it, can raise our risk of secondary cancers. So while I think it is perfectly legitimate to approach survivorship by putting cancer out of our minds, we can't do that completely. It's a good idea to see a dermatologist regularly. It's a great idea to do regular self-examinations for cancers that can be detected by them. It's a wonderful idea to get regular colonoscopies, mammograms, whatever other screenings that are available. If your oncologist hasn't recommended them, ask them about which regular screenings they would recommend.  

The dermatologist says the prognosis is "excellent." Squamous Cell Carcinoma is usually very manageable if it is caught and treated early.

[The surgery coordinator just called back. I have the surgery scheduled in about 10 days.  More handsome pictures coming your way.]

Take care of yourselves, everyone. I mean that.

FLF Webinar on Emotional Health and Wellbeing

The Follicular Lymphoma Foundation is hosting a webinar called "FL and You: Emotional Health and Wellbeing." It will be held on Friday, 31st January​ from 8:30–09:30 EST (13:30–14:30 GMT, 21:30–22:30 AWST).

​This one looks like it's going to be great. It will feature several speakers: Dr. Mitchell Smith, Chief Medical Officer of FLF; Carmen Hilton, a clinical social worker; Nicky Greenhalgh, Clinical Nutritionist, FL patient, and founder of the Living with Follicular Lymphoma group on Facebook; Ben Johnson, an FL patient advocate; and Leah McAslan, caregiver for an FL patient.

Full disclosure, though I'm not sure it's really necessary: I've been doing some work with the FLF lately, and I've had the chance to interact with some of the folks who will be speaking. Dr. Smith is fantastic, and he has a great ability to talk about difficult material in ways that make sense to patients, and he clearly makes them a priority. Nicky has done a great job with the Facebook group, and her work as a nutritionist comes from her experience with FL. And Leah, as a caregiver, understands what a patient needs.

Like I said, this is going to be a great webinar.

And as I have said, issues related to survivorship have become more and more important to me, as I move farther and farther from my initial diagnosis. And as I have said for years, given that so many of us are asymptomatic, living with Follicular Lymphoma is as much about emotional symptoms as physical symptoms. 

That's going to be the focus of this webinar. Looking at the line up of speakers and their different expertises, you can see that.

The FLF understands this, too. If you look at their blog, you'll see lots of posts about these kinds of emotional health and wellbeing issues. And their Support Hub, which includes a link to register for the webinar, also has lots of information about living with FL that goes beyond the physical aspects. It all matters.

You can register for the webinar here. The FLF is a global organization, so no matter where you live, you can attend. 

I hope you'll consider it. And if you can't make it at that time, the FLF will post it on their website later, as they do with all of their webinars.

Stay well.

Targeted Oncology Videos on Follicular Lymphoma

 The website Targeted Oncology has a new video series called "Emerging Treatment Updates: Antibody Drug Conjugates in Relapsed/Refractory Follicular Lymphoma." The series has six videos (so far, anyway), featuring Dr. Juan Pablo Alderuccio of the Sylvester Comprehensive Cancer Center in Miami, Florida. It's one of those video series that gives an overview of FL treatments, though this one also puts a lot of focus on a particular type of treatment.

As the title of the series implies, there is a lot of focus here on Antibody Drug Conjugates, or ADCs.

An ADC is kind of a combination of a couple of different types of treatments. One of the elements is an antibody -- something like Rituxan. Antibodies are useful treatments for FL because they target the cancer cell. Rituxan, for example, works so well because it can seek out a particular protein (CD20) on B cells (the type of immune cell that is affected by FL). Going right to the cancer cell makes it different from something like traditional chemotherapy, which would affect cancer cells, but would also affect a lot of other healthy cells as well.

With an antibody conjugate, an antibody is combined with another type of treatment. The antibody can identify the cancer cell and close to it, and then deliver that small amount of the second treatment directly to the cancer cell. So you get the potential power of the second treatment along with the focus on the antibody. (And example is something like Zevalin, which attached a small bit of radiation to the antibody. Powerful, effective treatment that should have been used more than it was.) 

The Antibody Drug Conjugate that Dr. Alderuccio discusses in these videos is Loncastuximab Tesirine, which is approved by the FDA and the European Medical Agency for treatment of DLBCL. Loncastuximab is an antibody that targets CD19, and Tesirine is the "payload" that gets added to it. Tesirine is a type of chemotherapy called a pyrrolobenzodiazepine. Its job is to mess with the DNA of cancer cells and keep them from growing. 

So, like other ADCs, Loncastuximab Tesirine combines an antibody that can recognize the cancer cells, and a powerful substance that can affect them. 

The video series starts with an overview of current treatments for Relapsed/Refractory FL, and then gets more into Loncastuximab Tesirine in particular. A recent study combined it with Rituxan, making it effective because the two antibodies are targeting two different proteins on the surface of the cancer cell (CD19 and CD20), increasing its chances of finding the cell but not increasing its side effects. (This research was discussed at ASH, and it had very good results in a small trial.)

In a later video in the series, Dr. Alderuccio discusses some other ADCs in development -- Polatuzumab Vedotin and Pinatuzumab Vedotin and their use to treat Diffuse Large B Cell Lymphoma. He finishes by looking at the future of FL treatment and how ADCs might fit into the options available. (I always enjoy seeing and hearing a Lymphoma expert get excited about future treatment options.)

It's a pretty good video series -- the videos are fairly short, though there are unfortunately no transcripts for translation purposes. But it does highlight a type of treatment that we haven't heard much about for Follicular Lymphoma, despite its success in more aggressive lymphomas. 

I have to say, I'm a fan of ADCs, going back many years to when I first started reading about Zevalin and other RadioImmunoTherapies. I like the idea of using a proven targeting agent and trying to minimize side effects. It will be interesting to see if these ADCs continue to be effective for FL as trials move on. I'm all in favor of us having more treatment options.

17 Years

Today is my 17th diagnosiversary. I was diagnosed with Follicular Lymphoma 17 years ago today.

This is also the 15th anniversary of my first Rituxan treatment. (I haven't needed treatment since I finished the 6th round of that Rituxan.)

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

I always take this day as a time for reflection. Some years, I start thinking several months in advance about what I want to write for a diagnosiversary post. Sometimes I don't get much inspiration until the day is almost here.

I tossed around lots of ideas over the last couple of months, but none of them really felt right. You all came very close to getting a long meditation on the Pink Floyd song "Wish You Were Here." (That idea was inspired by this video.) It would have been interesting, but as I was thinking it through, it was moving toward the negative. 

And, weirdly, I find that I have been doing that a lot lately. It's weird because I am mostly a very positive person. I haven't written anything for Blood-Cancer.com in a long time, even though I've started four or five pieces. But then I found that what I was writing was too negative. And as I said, I find that a little weird. I should be much more positive when I write about cancer. In terms of my cancer-related health, I'm doing really well. My 17 years out from diagnosis is fantastic. No complaints there.

I think, being so far from diagnosis, it's easy to be critical. It's kind of like being a fan of a favorite sports team for a very long time. Praising what is going well is too easy. It's almost like being a "super fan" means you can (and should?) criticize very specific things. All of the new fans and bandwagon jumpers don't know enough to be critical, so they are overly excited and positive. The true fans can say "Yeah, but..." and tear into the coach or the quarterback or the goalkeeper. 

So after 17 years, I guess I'm a Follicular Lymphoma Super Fan?

That doesn't sound right. 

I'm going to stick with "Cancer Nerd."

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

So over the last few weeks, I have forced myself to stop thinking about Follicular Lymphoma, and my experience with it, in negative, critical ways. (I tried to get all of that out of my system with my year-end predictions post.)

I still wasn't sure about what I was going to write, though. But then a few weeks ago, I heard someone speak about Hope. And the more I listened to them, the more I realized that they were saying things about Hope that I hadn't really thought about before. 

And I think about Hope a lot. I even wrote a column for Lymphoma News Today for about a year called Things That Give Me Hope. (For some reason it was easier for me to be positive in 2018 and 2019.) So I want to focus this Diagnosiversary post on Hope, and some of the ways that speaker got me to think about it in different ways. They are good reminders for those of us who have been diagnosed with cancer.

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

"Hope is Swimming Against the Current." The first thing that the speaker said that really caught my attention was this: Hope is about swimming against the current. This one is, in a way, a little bit negative, because it kind of puts the emphasis on the bad things that are happening. By definition, Hope is about wanting things to be different than they are, especially in ways that are very difficult to change. And if you've ever swum in the ocean when the tide is coming in, you know what kind of effort is required to swim against the tide. It's a little bit negative because it emphasizes that, when we are relying on Hope, it means that the evidence is against the thing we want to happen. Swimming against the current implies that everything is moving in the wrong direction for us. 

This phrase, though, also reminds me of one of my favorite songs: "Swim" by the band Jack's Mannequin. You can find the lyrics in the "About" section of the linked video, in case you need to translate. I first heard this song when one of my brothers-in-law sent it to me. The singer and song writer, Andrew McMahon, is a blood cancer survivor. He was diagnosed with Acute Lymphoblastic Leukemia (ALL) while the band was touring, and he went through chemotherapy, radiation, and a stem cell transplant. The song is about his experience, and the people in the video are his friends and family. A few months after I had heard it, I was invited to the HealthEVoices conference, and all of the participants put together a Spotify playlist of our favorite songs. I, and another health advocate, both offered "Swim." (I can't find the HealthEVoices playlist on Spotify, but if any of you want to do some deep digging, send me a link if you find it.)

So while the idea of swimming against the current isn't new for me, what is new is the idea that Hope is all about that. 

I think my point here is probably better explained in the second thing that I got from that speaker.

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

"Hope is Something We Work At, Not Wait For." Swimming against the current takes some work -- sometimes some very hard work. It's not a passive activity. And Hope is too often taken to be a feeling, rather than an action. But real Hope requires doing something.

I think this is why so many FL patients get caught up in "quick fixes." I still see lots of posts online, in the various cancer and lymphoma discussion boards I am on, where patients are asking things like "What's the best diet to have a long remission?" I don't think there is one -- I had greasy pizza for dinner last week, and I regularly eat things that are "bad" for me, and I've been doing that for 17 years because it makes me happy. But that's another subject for another post.

My point is, Hope comes from doing something, from taking action, even if it's a misguided action. Not taking action and and expecting a different outcome isn't Hoping, it's Wishing. That's different. It's passive.

Hope comes from doing something to make things different. We can't necessarily change the current, but we can get stronger to make the swimming easier. We can change our diet (and be realistic about how it affects our disease). We can move our bodies more and try to be healthier for when our bodies might need some strength. We can watch and wait -- not just wait, which is passive, but watch, which is active.

For me, learning about my disease, and writing about it, has always been an act of Hope. I want to know what might come next. I can't really control the current -- what my cancer cells will do. But I can control the swimming -- what decisions I have to make when the time comes, and I can do it fully informed. I know what's available for treatment. I'm not going to just Wish. I'm going to Hope, and know that I've done what I can to affect the outcome.

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

"Hope for the Long Haul Requires Community." This is the point from that speech that might have affected me most, because it's the one that I didn't realize was true. Hope is hard when you're the only one doing the Hoping. It's a whole lot easier when there are others with you, especially if you need Hope for a long time, like we do.

If I'm going to stick with the swimming idea, I'd imagine a whole lot of people swimming together against the tide, all going in the same direction. Some of them are going to be pushed back into you as the waves come in. But some of them are going to break the waves in front of you and make your path a little easier. And we'll swim out to the front of the pack and be the one breaking the waves sometimes, getting a face full of water. 

I can picture that in my head, even if you can't. The point is, Hope is easier in a group because we can see each other's successes, and share each other's burdens. I remember long ago, maybe when I had hit 5 years out from my diagnosis, not wanting to share that milestone in an online group. There happened to be lots of people struggling at the time. Some of them were struggling emotionally, coming off the holiday season and having a tough time with that. Some were struggling physically, newly diagnosed and going through aggressive treatment. I didn't want to jump in and share my happy news. That just didn't seem right. But then someone else did just that, and it actually lifted up the people who were struggling. So I shared my own good news, and it didn't drag people down, as I had feared. It lifted them up. Someone told me, "I have days when I'm not sure I'll make it six months. But now I see that 5 years is possible, and gives me so much strength!"

But you can't get that from swimming alone. That kind of Hope only comes from community. It lets you see the possibilities. It gives you something to work toward.

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

I hope this blog provides that kind of community for you. I hope you're finding other communities, too, in person or online, with family and friends or with other patients. 

And I hope my writing about Hope gives you reason to be Hopeful.

Mostly, my wish for you is that you find ways to work toward Hope, and you get the chance to do it for many, many years. I plan to keep writing for another 17 years, at least. I want you all to be here with me.

As always, I am grateful to have such wonderful readers. Thank you, and stay well.

OK, One More ASH Review

I know I said in my last post that I was done with ASH for the year, but now I need to give you information about one more ASH-related event.

The Lymphoma Research Foundation is doing a series of webinars on presentations from ASH. Next Wednesday, January 15, they will be presenting "Highlights from the American Society of Hematology (ASH) 2024 Annual Meeting: B-Cell Lymphomas." The webinar starts at 2:00pm EST and will last about an hour. The presenter will be Dr. Ann LaCasce of Dana-Farber and Harvard Medical School.

You can register for the webinar here.

I like the LRF webinars. They do a good job of picking speakers and topics. As for this one, if you're interested, keep in mind that this one will focus on all B Cell Lymphomas, not just Follicular Lymphoma. My guess is that Dr. LaCasce will talk about Tafasitamab, and that will be the only thing she talks about regarding FL. But it would be interesting to hear her take on that trial, and to hear abut some non-FL research as well. So it could still be worth the hour if you want to do the Cancer Nerd thing.

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

One more quick comment, since there isn't much to say about ASH.

A few weeks ago, I had the privilege of being part of the Peer-Reviewed Cancer Research Program, part of the Congressionally-Directed Medical Research Programs. This program gives very large grants to cancer researchers so they can study cancers that affect active military members, veterans, and their families (which amounts to pretty much everybody -- cancer affects us all). The PRCRP proposals are divided into groups based on the type of cancer they focus on, and then groups of reviewers look at them, discuss them, and score them. The reviewers include oncologists and scientists, but also include Consumer Reviewers -- patients, survivors, and caregivers, who provide important insights about how the proposed research might affect patients. 

I served as a Consumer Reviewer this year. I would love to tell you all kinds of details -- who I worked with, what kinds of proposals I looked at, even which panel I served on. But I can't. Strict confidentiality rules.

But I can tell you this -- I am so very excited about the kind of research that's being done now, and that will come us in the next few years, and about the people who are doing that research. I don't know which proposals will ultimately be funded, or which of those will be successful. But the direction we are moving in is awesome. We have so many reasons to be hopeful/ And I like to think I did a good job in representing patients. That could only happen because of all that you share with me, which gives me an understanding of what it means to be a cancer patient, beyond my own experience. So thank you for sharing your lives with me. Keep doing that.

More to come soon. Take care.