Update on Non Hodgkins Lymphoma

Patient Power has a video interview with  Dr. Joshua Brodey from Mount Sinai School of Medicine on advances in Non Hodgkin's Lymphoma. (It includes a very helpful written transcript, if you can't watch or understand the video.)

The interview is basically about the things that make Dr. Brodey excited about NHL. It's not an interview about Follicular Lymphoma specifically, or any other particular NHL sub-type. Butmost of what he talks about is related to FL in some way.

Some highlights for me:

• When he's asked about CAR-T, he says "This is so exciting when I describe this therapy to my patients I swear to God it sounds like science fiction.  It sounds like this is Star Trek medicine.  I mean, this is the step right before the little phaser beam that just makes people healthy.  It's almost that amazing." CAR-T is a big deal (read more here). It's approved now for more aggressive lymphomas (including transformed FL), but there are trials for more slow-growing, indolent FL types.
•  Right now, CAR-T is a third-line therapy, used after two other treatments have failed. Dr. Brodey is excited about finding ways to make it a second-line or even first-line therapy, so get it to more patients, sooner.
• He talks about antibody drug conjugates as an alternative to chemotherapy. While chemo attacks healthy cells as well as cancer cells, antibody drug conjugates are much more targeted. Like Rituxan, which targets the CD20 protein that is on the surface of the B cells that cause FL, other conjugates target different proteins like CD19 and CD79. Dr. Broadey says that one of them, when added to Rituxan + Bendamustine, makes the combo even more effective.
• Dr. Broadey also discusses immunotherapy, which he calls the greatest advance in oncology ever. Immunotherapy uses the body's own immune system to attack cancer cells. While some check-point inhibitors have shown a little success in NHL (including FL), they haven't been as successful as many had hoped. Researchers are looking at ways to use them more effectively, maybe by combining them in new ways.
• The interview ends with the advice that second opinions are always a good idea, especially going to a specialist who might know more about some of these newer treatments that are in clinical trials. Dr. Brodey makes it clear that doctors "have no ego" in this. They are fine with getting a second opinion. (That's nice to hear.)

 Lots of good stuff in the interview. As always, I really enjoy hearing an expert talk about new treatments, and being able to hear the excitement in his voice.

We have much to be excited about, too.

When Someone Says the Wrong Thing

My latest on Blood-Cancer.com: "When Someone Says the Wrong Thing."

I do like to read other cancer patients' stories. I'm always amazed at how much other people -- some with completely different kinds of cancer -- have had the same experience as me.

Often a bad experience.

I especially like the "Things You Shouldn't Say To a Cancer Patient" stories. We've all had them, I'm sure.

In this Blood-Cancer.com piece, I share my own experience, and give my suggestion for dealing with it. As you all know, I tend to try to look at the positive side of things. That includes the sometimes hurtful stuff that people have said to me over the years. (A little preview -- It's usually pointing out some way that I'm living my life wrong.)

A few days ago, I came across a video that someone posted on Facebook. It's a song by a British group called Fascinating Aida. This is the first I've heard of them -- maybe some British folks are more familiar with this very funny trio?

Anyway, one of the group's members is a cancer survivor, and wrote a song about her experience called "Big C," which they perform in the video. It starts a little slow, but soon they sing about some of the advice she's been given. It's very familiar to me. Maybe also to you. (Also, there's a bad word at the end of the song, so be warned.)

Read my piece and watch the video. (I suggest you do it in that order.)

Hope you like them.

Liquid Biopsies for Lymphoma

Very cool research out of Stanford university School of Medicine -- liquid biopsies that can help doctors tell if a treatment is working or not, weeks or even months earlier than we've previously been able to tell.

The research was published in the Journal of Clinical Oncology, in an article called "Circulating Tumor DNA Measurements As Early Outcome Predictors in Diffuse Large B-Cell Lymphoma."

So, first off, the research was done on patients with Diffuse Large B-Cell Lymphoma (DLBCL), which is not Follicular Lymphoma. It's more like a meaner, more aggressive cousin. And it's the type of lymphoma that FL most often turns into when it Transforms.

Like Follicular Lymphoma, DLBCL comes in lots of different forms, so it's hard to predict which way it will go, and which treatment might work best. The liquid biopsy described in the article might help with that. (A press release from Stanford was a big help to me in understanding all of this.)

What's a "liquid biopsy"? Well, most of us have had solid biopsies -- maybe a fine needle aspiration, where a few cells are taken from a lymph node. Maybe a full lymph node removal (like I had), and maybe even a bone marrow biopsy (me again!). Cells are removed and examined to determine if they are cancerous.

A liquid biopsy involves the same process -- looking at cells to determine if they are cancerous -- but the liquid is blood. They have always been hard to do. There is a lot moving around in the blood, and a cancerous cell in the blood might be on its way out, so it doesn't say much about the cancer that's happening elsewhere.

For this study, the researchers looked at something called "Circulating Tumor DNA," or ctDNA. Basically, when a cancer cell is dying, it releases ctDNA. The researchers were able to find the particular DNA sequence they were looking for in the blood (there were possibly millions to search through).  [And don't ask me how they picked them out. I'm almost certain they didn't do it by hand.]

They looked at 271 DLBCL patients in six cancer centers (three in the U.S. and three in Europe). They measured the amount of ctDNA in the blood before they began treatment, and then after the first round of chemo, and again after the second round.(Chemotherapy is still the most common first treatment for DLBCL.)

About 98% of patients had ctDNA in their blood before treatment. A drop in ctDNA after a treatment is a good sign. They found that patients who had a 100-fold drop in ctDNA after the first treatment, and a 300-fold drop after the second treatment, had superior outcomes after 24 months -- they were more likely to have lived without the disease coming back in that time.

The implications here are very important. Right now, a patient might have 6 rounds of chemo, to make sure the cancer is all gone. If a liquid biopsy shows a huge drop in ctDNA after only two rounds (over three weeks), that might show that the two round of chemo was enough, and the other 4 rounds weren't necessary. That's a huge Quality of Life issue -- fewer side effects, less cost.

At the same time, a patient might have an increase in ctDNA after 2 rounds. that would show the chemo isn't working, and would allow doctors to stop it and choose a different treatment right away, one that is more aggressive. That could possibly save a life.

The researchers have already done successful research on this process with lung cancer. Maybe similar tests for other cancers -- including FL? -- are in the future?


Maybe so. We can keep hoping. We have lots of treatments available to us -- and more on the way -- but knowing whether or not they are actually working would be an excellent next step.

Update: IBM's Watson and Cancer

Bad news for IBM's super computer "Watson" -- it's not helping cure cancer. In fact,it might be making some cancer patients worse.

Watson was a bid deal in 2011, when it was on the TV quiz show Jeopardy, and  beat the greatest  Jeopardy champion of all time, Ken Jennings. Clearly, if a computer can beat someone at trivia, it can cure cancer. So that's what IBM announced Watson would be doing.

I have to say, I was pretty excited about it at the time. I wrote about Watson in 2012, and again in 2013.

The plan, as I said in 2013, was to give Watson 1.5 million patient records and outcomes; 600,000 pieces of medical evidence, and 2 million pages of text from medical journals and clinical trial records. Watson could then use all of that data and apply what it learned to new patients, and recommend treatment.

It didn't work out as they had hoped. According to The Wall Street Journal, there are no published research reports that show Watson has improved patient outcomes. In some cases, the computer didn't do anything that doctors couldn't do. In other cases, Watson recommended the wrong treatment.

On the plus side, some say that consulting with Watson is helping doctors stay up-to-date.

But a computer is only as good as the information that it is given. that's part of the problem, which is kind of ironic -- the humans that feed Watson the data about cancer aren't fast enough to keep up with advances in cancer.

(That's kind of cool -- we're learning more about cancer than the computer can keep up with.)

I wish I could say that I predicted that things would go this way, but I didn't. I was excited about it all, six years ago.

I'm still excited about it. There's probably a place for Artificial Intelligence in cancer care. But probably as part of a team that includes humans.

If nothing else, humans are probably better suited to pick up the kinds of subtle cues that point to problems with a patient's mental, emotional, or spiritual health. There are some AI programs that can help people with mental health issues. But ideally, an oncologist would get to know a patient well enough to know when there are issues.

(And I did say that in 2012 and 2013, because I'm awesome.)

Of course, just like a super computer is only as good as the information it is given, and could only pick up problems it is told to look for, a human doctor can only solve the problems he or she knows to look for. A doctor who doesn't bother getting to know a patient isn't going to pick up on those cues. And doctor who don't recognize the importance of a patient's emotional and physical health won't even ask about it -- no matter how super he or she is.

I say this as I start looking for my 5th oncologist in 5 years.

I don't want a super computer. Just someone who will listen.

Is Chemo Necessary Anymore?

Modern Medicine Network has a fun debate going -- "Can chemotherapy be eliminated in the treatment of Follicular Lymphoma?"

OK, maybe "fun" isn't the best word to describe it. But it's fun for me. We're in that dull period between ASCO (in June) and ASH (in December). Those times are when the internet is full of great research. But now I'm so desperate for good FL stuff. This is a solid debate. It's "fun" because I fi ally get to read something good.

There are two sides of this debate.

First we have Dr. Loretta J. Nastoupil from the MD Anderson Cancer Center. Dr. Nastoupil's side is "Yes—Chemotherapy Need Not Be Routinely Used." She argues that Overall Survival has increased for FL patients, but that has come from adding rituxan to chemotherapy, not from newer, or better, or more chemo. She also argues that some recent trials have shown the dangers of chemo, as much as they have shown the effectiveness of non-chemo. The treatments showing the most promise these days are not traditional chemo -- things like lenalidomide (especially combined with Rituxan, make the combo called R-Squared), lots of inhibitors (which stop the processes that cancer cells need to go through to grow and survive). In the end, until we have some better ways of predicting how FL will behave, we need to focus on balancing effective treatments with Quality of Life. And that means using less chemo.

On the other side, we have Dr. Paul Barr of the University of Rochester Medical Center. He says "No—Chemotherapy Remains an Essential Part of Therapy for Follicular Lymphoma." While Rituxan added to chemotherapy was responsible for increased Overall Survival, it was better chemo that started that upward trend. When patients are first treated with immunochemotherapy (usually Rituxan + CHOP, CVP, or Bendamustine), they can achieve long-lasting remission, with other non-chemo options available for later treatments. And while maintenance with something like Rituxan can be helpful, it can also cause problems -- the best benefit comes from the chemo that came before it. In the end, it is immunoCHEMO that has the best benefit.

Of course, if there was an easy answer, there wouldn't be a debate.

Here's what I think about it all.

(And I know you want to hear what I think. Who better to have an opinion than someone whose only training in this area was that he was a Biology major in college, 30 years ago, for one semester?)

But, really, as a patient and cancer Nerd who has been looking at research in FL treatments for about 10 years, I have noticed some things.

For what it's worth, I don't think we're getting rid of chemotherapy any time soon.

Probably the biggest reason is that we have years and years of data about the long-term effectiveness of chemo. We know that R-CHOP and R-Bendamustine are very effective over 10 years. We just don't have that data yet for R-Squared or some inhibitors. they just haven't been in regular use that long. Maybe 10 years from now, that will change.

I have noticed, too, that there are fewer and fewer new clinical trials involving chemotherapy. Most resources are going into things like inhibitors and immunotherapy. And that's the way it should be. Chemo has its place, but newer treatments are usually more targeted, and they promise to be effective with fewer side effects. There are some research reports that look at chemo, but they are usually long-term studies that started years ago.

So, yes, there is still a place for chemo. My guess, though, is that as we learn more about the long-term effects of newer treatments, and even better ones are developed, that chemo will become less common.

But that will be a long time from now.

For now, let's be happy that we have lots of options, including chemo, that we know are effective and pretty safe.

Things That Give Me Hope

As you have probably realized, I've been doing a  lot of writing lately. Not just on this blog, but for other folks, too.

I've really enjoyed that other writing -- I'm a Community Advocate for Blood-Cancer.com, for example, and done some other small projects, like the guest blog post for my friend Al.

I have such great loyal readers here on the blog, and writing for those other sites lets me engage with some new readers. I get so much satisfaction from being an advocate. I've been able to take something awful -- a cancer diagnosis -- and turn it into something good. And I get to do that while doing something I love -- writing.

Now I've got something new to share -- I'm writing a column for Lymphoma News Today. The idea for the column came a few months ago, when I was reflecting on my 10 years as a lymphoma patient. So much has changed in 10 years -- in my own life, and in the world of Follicular Lymphoma. I wanted to find a way to write about all of those things.

But I also wanted to make sure I kept up the same theme that I've had in 10 years of blogging -- Hope. That's why I do all that research about new treatments. It brings me Hope. I know that not all of those new treatments will work out, and I try to be realistic about it. But Hope isn't about realism. It's about possibilities, and hanging on to them.

So the Lymphoma News Today column is called Things That Give Me Hope. I'm going to write at least once a month, and look back at the people and things that have done just that -- given me Hope. Given me something to look forward to. Given me a spark of possibility that things are going to be OK.

The first column went up on Friday, and within a few minutes, someone posted a comment -- a woman whose husband had just been diagnosed. I got to respond.

That makes it all worth it.

More to come -- here and elsewhere. Thanks for reading.

PTSD and Cancer

As many of you know, I have been concerned for a long time about the mental and emotional health of Follicular Lymphoma patients. Many of us are able to Watch and Wait. Many others respond to treatment, which then allows them to go for a long time until the next treatment -- maybe a very long time.

That's been the case with me, in both instances. Two years of W & W, successful treatment, and then 8 years (and counting) of -- what? more waiting? (or maybe just living).

The point is, for many of us, we are able to spend a long time with no physical symptoms. And yet, the cancer is still there. Our symptoms are emotional -- worry, anxiety, helplessness. All of it.

In May, I wrote about this in celebration of Mental Health Month. Mental health has, unfortunately, been in the news a lot lately, usually because of something bad happening to a celebrity. The message in response from the mental health community has been simple: when it comes to mental and emotional health, if you need help, ask for help. And if you know someone who needs help, please reach out.

There's an unfortunate stigma when it comes to mental health. We seek help, without embarrassment, for our physical health. We shouldn't be embarrassed to ask for help for our mental and emotional health, too.

I've been lucky to get to know some mental health advocates. Like me, they are patients with a condition, and they are using their experience to help others. I've learned so much from them.

One of them, Al Levin, was kind enough to let me use one of his blog posts in my May post. I have returned the favor -- Al published a guest post of mine in his own blog. It's about PTSD and cancer -- how a traumatic event (getting a cancer diagnosis) can come back and affect us, months or even years later. I hope you'll take a look.

And the message is the same -- when it comes to mental and emotional health, if you need help, ask for help. And if you know someone who needs help, please reach out.

I'm grateful to Al for letting me tell my story to some new folks. Al has a lot of good things to say himself, on his blog, and in his podcast. Give him a read and/or a listen.

But mostly, remember to pay attention to your own mental and emotional health, and don't be afraid to ask for help -- from a caregiver, a family member, a support group, or an oncologist. They don't need to be the ones to help you, but they should be able to help you find the person you need.

Vote for My Blog (Again)

Thanks to all of you who have endorsed me for the WEGO Health Awards this year. I really appreciate your support.

Would you consider voting for me again?

A couple of weeks ago, I was nominated for a third award -- Best Kept Secret -- to go along with the other two I was originally nominated for -- Best in Show: Blog and Patient Leader Hero. If you endorsed me for the other two, you can endorse me again for Best Kept Secret.

And if you haven't had a chance to endorse me at all, feel free to click on any of the badges to the right.

The top three vote-getters in each category make it to the finals, along with two others that are chosen by a panel of judges. Those 5 finalists are then looked at by a new panel of judges, and a winner is chosen.

The Endorsement phase (when you get to vote for me) ends on August 17, so you still have a little time.

Thanks again, everyone. You're the best cancer community on the web.

The Problem with Complimentary Medicine

Disturbing research from Yale oncologists last week: cancer patients who used Complimentary Medicine have double the risk of death than patients who don't. The study is called "Complementary Medicine, Refusal of Conventional Cancer Therapy, and Survival Among Patients With Curable Cancers," and it appears in JAMA Oncology.

There's a lot to talk about here. It's an emotional issue for a lot of cancer patients. And it has some important lessons for Follicular Lymphoma patients.

First, we need to understand what Complimentary Medicine is, and what it isn't. (I'm going to call Complimentary Medicine "CM" from here, because I'm a horrible typist, believe it or not, and it's a lot to type.)

CM is often lumped in with Alternative Medicine, and together they are known as CAM (Complimentary and Alternative Medicine). They're different. Alternative Medicine, as the name says, tries to find an alternative to conventional medicine. CM, on the other hand, tries to find ways to compliment, or work with, conventional medicine.

So, in terms of cancer, conventional medicine would include things like surgery, radiation, chemotherapy, immunotherapy -- the things that your oncologist is probably recommending, and that have been studied in clinical trials and approved by the FDA or other regulatory bodies.

Alternative Medicine is stuff that hasn't been approved. It might be studied, but not in clinical trials (at least, not any that are reported anywhere). Alternative Medicine includes a lot of things that people have suggested to me, or that I've seen discussed in Lymphoma groups online. Things like the juice of berries that cost lots of money, or herbs, or whatever they do in clinics that are run by people who don't have medical licenses anymore. When someone tells me about one of these treatments, they usually tell me about a friend of a friend who was cured by it (but not someone they actually met), or they say "studies have shown that this works," but they can't actually show me a study.

CM is a little different. It's sometimes called Integrative Medicine, and the idea is that it's used with conventional medicine. It includes things like supplements, traditional Chinese medicine, yoga, acupuncture, massage, and meditation. The idea is not to replace chemo or immunotherapy, but to use both together. So while someone is going through chemo, they may try natural supplements to help with nausea (rather than a prescription medicine), or do yoga to help build strength, or meditation to help with emotional side effects.

But CM is meant to be complimentary -- used with conventional medicines, not instead of them.

And that's where the problem comes in.

The JAMA Oncology study looked back at he records of almost 2 million cancer patients with one of 5 different cancers (none of them had blood cancer). They found that patients who used CM were more likely than those who didn't use CM to refuse surgery, chemo, radiation, and hormone therapy (all conventional treatments). The CM users also had a lower Overall Survival after 5 years.

That's disturbing.


CM becomes an alternative, rather than a compliment.

It's a fine line, and probably easy to cross. We all know what chemo and radiation and surgery and other treatments do -- they all have side effects, short-term and long-term. We've all heard the horror stories about people who had problems with those side effects (and some of us have lived through them). And we'd all love to think there are treatments that can help us without the side effects.

And when we hear about a friend of a friend who found that kind of treatment, or something that "studies have shown" is a possibility, we are tempted to jump at it.

Things that are "natural" are better, right?

Sure. However -- arsenic is natural, too. But I'm not taking that to cure my cancer.

I get it. We all want that magic formula. But as much as I rely on Hope to get me through some days, I know it's not going to extend my life. Not without Rituxan.

Personally, I think CM is an OK thing. The research hospital I go to has an Integrative Medicine Office. They offer classes on meditation and Tai Chi, and they will consult with cancer patients on which supplements are most appropriate for them. They are also very clear about two things -- first, the services they offer are "evidence-based" (there has been research done that shows that it can help patients, especially with Quality if Life), and second, the services are not meant to replace conventional therapy.

Honestly, if their Tai Chi classes were more conveniently scheduled, I would take one. But I wouldn't expect it to shrink my nodes.

So I hope the message I want to get across is clear -- CM can be a good thing. But you still need chemo, immunotherapy, and other conventional therapies that have been tested and approved. It's literally a matter of life or death.

That said, two more important things to keep in mind.

First, the study suggests that one reason why some people turn to CM is because of financial reasons. In other words, they don't have the money for chemo or other conventional treatment, so they hope something cheaper will help. It's an important point -- these patients aren't really making a choice between CM and conventional treatments. They're doing what they can to stay alive. They have no choice. This is sad to read. I wish I had a solution, other than to encourage them talk to the oncologist and see what kind of financial help might be available for them.

Second, Follicular Lymphoma patients in particular have to be really careful about CM, and giving it too much credit. Our disease is a funny one. Often, it gets worse, but other times it gets worse and then better. I just experienced this myself -- a lymph node popped up near my hip in March, and by the time I saw the doctor last week, it was shrinking again. "They do that," the oncologist said.

But it would be easy for me to think that the node shrank because of something I did, rather than it just doing it on its own. My wife's walking partner has been away for a while, so I've been walking with her once or twice a day instead. That's my only major lifestyle change I can think of in the last couple of months. I could easily make the connection -- more walking led to my shrinking node. Do-it-yourself Complimentary Medicine.

Of course, the walking is very unlikely to be the cause of the node shrinking. No more than any other CM would be. It would be tempting for some people to substitute a diet change, or a supplement, or an exercise routine for the walking, and think "I don't need chemo -- I can just do X instead."

Resist that temptation, FLers.

Walking with my wife has been wonderful in many other ways. It starts the day off with some exercise. It gives us a chance to talk -- to dream about our plans to travel, so gloat over how great our kids (usually) are, to work through stuff that's bothering us. It's CM at its best -- good for an overall better Quality of Life.

But a walk in the neighborhood won't cure cancer.

Do what makes you feel good. But remember -- no magic formulas.