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.

Integrative Medicine and Cancer

I want to share a link to a program from Yale Cancer Answers. I've shared some before. Yale Cancer Answers is a local radio program that gets put up online after it has been broadcast, and it focuses on a different cancer-related topic every week. It's sponsored by Yale University's cancer hospital, and features a cancer expert who works at Yale in some capacity.

A lot of times, the topics are very specific -- too specific for me to be very interested in. But sometimes they are more general, and interesting for any cancer patient or caregiver.

The show from a couple of weeks ago had one of those more general topics -- Integrative Medicine.

The episode can be found here, if you want to listen to it, and here if you want to just read the transcript.

The Yale expert being interviewed is Dr. Gary Soffer, who is Assistant Professor of Clinical Pediatrics at Yale School of Medicine, but who also spends some time with patients practicing Integrative Medicine, especially cancer patients.

So what is Integrative Medicine? It's also sometimes called Complimentary Medicine, and includes things like yoga, massage, supplements, acupuncture,  and meditation.

More importantly, I want to stress from the start what it s NOT -- it is NOT "alternative medicine." There's a really important difference between the two. Alternative medicine might include some of the practices that I list above, but are considered an alternative or replacement to traditional cancer therapy. You're relying on supplements and meditation to cure or control cancer. I think it's a huge mistake, and a Yale study (mentioned in this Yale Cancer Answers episode) shows that patients who use alternative medicine tend to die sooner that those who use Integrative or Complimentary medicine.

Integrative or Complimentary Medicine, on the other hand, is used with traditional cancer treatments (like chemotherapy or immunotherapy). It is integrated into a treatment plan, or used to compliment traditional treatments, rather than act as an alternative to them. Yoga might help with pain management, or supplements might help with some side effects, or meditation might help with emotional health. But they are used with traditional treatments, not instead of them.

I'm all for Integrative Medicine because it does not interfere with conventional therapies, and because, when done properly, it is evidence-based -- research that uses a rigorous scientific method, like a clinical trial (and not based on stories of individual patients), and whose results have been reported widely in peer-reviewed journals (and not just on the website of a treatment center). If someone mentions a treatment option that seems to good to be true, and it's accompanied by "It works! They've done studies!" then I want to know who "they" were and where exactly I can see those studies. Otherwise, I'll stick with what I read in medical journals.

I found a lot of what Dr. Soffer had to say to be pretty interesting. He thinks there is a lot more Integrative Medicine happening than patients let on. Patients might be too embarrassed to tell their doctor about, say, a supplement they might be taking. A lot of times, the doctor's response is to say, "I don't now anything about that, so stop taking it." But an Integrative Medicine program like Dr. Soffer's allows the patient to speak with someone who is open to hearing about what they are trying, and who can offer evidence-based advice. Sometimes, a yoga class might be perfect, but other times, it might take a physical toll on the body that wouldn't be good. Sometimes a supplement might be a great idea, but other times, it might actually interfere with the chemo being given.

The important thing is, the Integrative practice is being shared with someone who has some expertise, who can give some advice about the good and bad that comes with the practice.

And, again, let me stress -- these are practices that work with traditional treatments, not in place of them.

It's an interesting show. Give it a listen, or read (or translate) the transcript.

ASCO Part 2: CBD and Cancer

I'm still looking at (and reporting on) some of the sessions at the 2020 ASCO Virtual Education Program, help earlier this month. These sessions don't present the new scientific research about cancer. Instead, they offer continuing education for oncologists on ways to be better, more informed doctors.

The latest session I have looked at is called Complimentary Alternative Medicine. 

As a quick reminder, let me explain the difference between Alternative Medicine and Complimentary Medicine, because they are different in important ways. In cancer, Alternative Medicine suggests treatments that are different from standard cancer treatments like chemotherapy, radiation, and immunotherapy. They offer alternatives to these treatments. From what I read in online groups, they are fairly popular with a lot of cancer patients. That's usually because people want to avid what they see as the negative side effects of things like chemo, though sometimes it's (sadly) because they can't afford things like chemo. The problem with Alternatives is that they are not proven to work. That might be harmless in some situations, but a study from a few years ago found that patients who rely on Alternative Medicine have a lower survival rate that those who take standard treatments.

That's complicated for Follicular Lymphoma patients. Some people may try Alternative treatments, and think they are working. But because FL can be a slow-growing disease, it's not the Alternative treatment that's doing the job; it's just the slow-growing nature of the disease. So if the FL becomes more aggressive, and the patient relies on the Alternative treatment that they think has been working, that could lead to unnecessary trouble, if they avoid standard treatment.

So that's Alternative Medicine. Complimentary Medicine (also known as Integrative Medicine) is different. Instead of replacing standard treatments, it compliments them, working with them to make them better (or to give the patient a better experience with them). Complimentary Medicine might have patients take standard chemotherapy, but then suggest something like yoga or tai chi to help with side effects. Or maybe marijuana to help with nausea. The chemo is still there. But the Complimentary treatment helps make the experience a little less awful.

So this session looks at Complimentary Medicine, and one of the presentations was "Cannibidiol Use in Oncology" by Dr. Tina Rizack.

Cannibidiol is also known as CBD, and, as Dr. Rizack points out, it has become fairly popular in recent years. A lot of the presentation gave some background about what CBD is and how it works, which was interesting (and might be especially interesting to the doctors that the presentation was meant for). I'm going to skip some of that background and get to the highlights.

CBD is a component of marijuana. Unlike THC, another component, CBD does not contain the compounds that make someone high. But it may have some other very positive effects.

I'm going to emphasize that word again: CBD may have some positive effects. I know from speaking with people who use it (I have never tried it myself) that it is very effective for some, but not for others. There are lots of reasons for the differences: the CBD content of a product does not always match up with what it says on the label (studies have shown there can be anywhere from 30% to 69% difference, so you might only be getting 1/3 of what you think you're getting). Quality can be a major issue, with some CBD products having impurities that interfere with effectiveness. And some people may just not get an effect, as with any medicine (Tylenol doesn't do a thing for me when I have a headache, but it works great for one of my kids). 

So what is it good for? Well, a lot of what we know comes from reports from individuals, rather than from larger studies, though there are some large studies out there. 

Right now, the only thing we know for sure, based on rigorous research, is that CBD helps children with certain rare types of epilepsy. That's the only large study that has led to an FDA approval. There have been some smaller studies that suggest a possible benefit, but none that have been tested on a large scale, such as a phase 3 trial.

Some of the uses that are related to cancer include pain reduction. Some standard cancer treatments, as well as some types of cancer, can cause pain that might be reduced with CBD. There is a study going on now in Australia that looks at palliative care in cancer patients, and early results seem to show that CBD may reduce pain. 

(I'm sorry that I don't have links to these specific studies. I really don't like mentioning research without giving you a way to look for yourself, which is really important. But since these are video presentations, they don't always give a lot of detail about where the information came from. But given that it's an ASCO presentation, by doctors for doctors, I trust the source.)

There is also some research that CBD can reduce the nausea that some treatments (like some chemotherapies) can cause. One found that CBD (and THC) improved the standard anti-nausea drugs that were given to cancer patients. But that was 10 years ago, and there hasn't been a study since that compared CBD to some newer, more effective anti-nausea treatments that are usually given today.

Other studies have shown that CBD helped patients with Graft-versus-Host disease, which happens when a patient's body rejects a transplant (including Stem Cell transplants that are common with some blood cancers). 

There is also some suggestion that CBD might help some people sleep better, maybe because it reduces pain and anxiety. And there is at least one study that shows, at certain doses, that CBD can reduce anxiety.

(Interestingly, the presentation said that people of different ages take CBD for different reasons. Younger people tend to take it to reduce anxiety, while older folks take it to reduce pain. That fits pretty well with the people that I know who take it.)

There is still a lot that needs to be tested with CBD. Dr. Rizack counted 247 clinical trials related to CBD, with 47 still recruiting. 9 of them were related to pain, and 2 to cancer (one for nausea and one for Graft-versus-host), with 1 more related to anxiety.

One final point -- there is NO EVIDENCE that CBD cures cancer, or that THC or any other compound from marijuana cures cancer (though an ASCO survey last year found that 39% of Americans think that marijuana does cure cancer). Maybe we'll have evidence for that some day, but for now, legal restrictions on research have made it hard.

So here;s the bottom line:

CBD may help some people with pain, anxiety, and nausea. Or it might not. The good news is that it's not addictive, and almost impossible to overdose on. The bad news is, it's easy to find CBD that is not effective, or contaminated, or at a lower dose than the product label says. CBD can also interfere with some medications, including some antibiotics and certain types of chemotherapy.

My advice, if you're looking for my advice, is to ask your oncologist before you try it. There's a chance he or she won't know much about it, so if there is an Integrative Medicine department at your cancer center (or at a nearby research hospital), ask them for advice. They may know of a reputable source, and have some suggestions for dosing.

Like any Complimentary Medicine, CBD might be a help, and the evidence from the ASCO presentation seems to suggest that taking it won't do much harm. But better to check with a doctor, the way you would before taking any kid of treatment, whether it's Standard or Complimentary.

 

Alternative Therapies & Follicular Lymphoma: It's Complicated

Yesterday, the Journal of the National Cancer Institute published an article called "Use of Alternative Medicine for Cancer and Its Impact on Survival." It looks at the use of Alternative Thrapies, and the news isn't good for people who make that choice. And while Lymphoma, especially Follicular Lymphoma, wasn't a cancer that was studied, it's important to think about this topic as it relates to that cancer that effects our lives.

The study looked at 840 patients with several types of cancer -- breast, prostate, lung, and colorectal.Two-thirds of the patients received Conventional Cancer Therapies, which the researchers define as Chemotherapy, Radiotherapy, Surgery, or Hormone Therapy. The rest took Alternative Therapies, by themselves, without Conventional Cancer Therapies. The main finding of the study is that those who took only Alternative Therapies had a lower survival rate than those who took Conventional Cancer Therapies.

There are a couple things that should be pointed out here. While they don't get into what the Alternative Therapies are exactly, they do see the problem with them as being that they are "ineffective and unproven." So while something like Rituxan doesn't exactly fall into any of their categories, it has been around for 20 years and saved and extended thousands of lives, so that doesn't qualify as either "ineffective" or "unproven." They mean treatments that have not been through a rigorous clinical trial process.

And it's also important to note that they are looking at Alternative Therapies on their own, not those that are combined with Conventional Cancer Therapy. That combination approach is sometimes called using a "Complimentary Therapy," since it is used as a compliment to traditional medicine, not as an alternative to it.

Lymphomation.org does a nice job describing these three different approaches. Alternative Practice (they don't call it "medicine," and I agree with that choice) is unproven. Complimentary practices, as they say, help you work through Conventional Therapies: "Yoga for pain or stress relief is an example.  Exercise to help manage fatigue is another.  Such activities are sometimes called integrative medicine when used by medical doctors."  They refer to Conventional Cancer Therapies as "Evidence-Based Medicine," since those treatments have gone through trials to back up the science that created them. I think they do a really nice job of distinguishing between those three things.

Now, my guess is that anyone who has been reading Lympho Bob for a while knows that I am a strong advocate for Evidence-Based Medicine, and not so much into Alternative Therapies. So I will assume that you feel the same way.

Still, it's worth talking about why Alternative Therapies are tricky when it comes to Follicular Lymphoma.

As you know, Follicular Lymphoma is often slow-growing. And sometimes, it "waxes and wanes" -- gets better on its own, and then gets worse on its own, often while we are watching and waiting. So while we might be watching our FL, trying to be healthy, doing yoga three times a week and eating broccoli with every meal, it's tempting to think that it's the yoga and broccoli are the reason we  haven't needed treatment yet. But they probably aren't the reason -- it's just the nature of our disease.

Not that there is anything wrong with yoga and broccoli. They are both great. And if they make you feel good, that's even better. But they probably won't cure your cancer.

And I "probably" because maybe someday we might find out that yoga and broccoli, in some way, do have an effect on cancer. But that would only be after some very rigorous, scientifically-designed, evidence-based testing. And not because you saw on a message board that they might, or that a friend of a friend swears that they do.

As someone who watched and waited for two years before initial treatment, and then who has waited for almost 8 years since then, I know how easy it would be to think that there was something that I was doing that put me in the good position that I am in. But, off the top of my head, if I had to think about something I've done consistently in all that time, that might explain why I haven't needed treatment, it's probably been blogging. Writing about cancer has certainly been helpful for me, emotionally, anyway, but probably not physically. And there are lots of cancer bloggers who have unfortunately not survived for as long as I have.

Also, I have a hamburger and fries about once a week. I don't think that's helped either. Also, I drink Scotch, which probably hasn't helped, either. (Although I'm willing to sign up for a trial for that one.)

The point, of course, is that Follicular Lymphoma is a complicated disease. It acts all weird, and that makes it hard to know what has been helping and what hasn't. The only real way to tell is to trust science.

Holistic Therapy Day

I don't get much good stuff from Twitter/X these days, but this morning, I learned there that today is Holistic Therapy Day. 

And I learned it through a post from Lymphoma Action, the United kingdom's only charity devoted to Lymphoma (as they describe themselves). I'm sure that those of you in the UK are familiar with them, and I hope that the resources they provide have been helpful to you. 

But their Twitter/X post today was helpful to me, linking to an article about Holistic Therapy and its relationship to Complimentary Medicine. 

As I have said many times before, I am not a fan of alternative medicine -- practices that are considered by some as better or as good as the science-based treatments that have been tested in clinical trials, but which have not gone through the same process themselves. There are lots of them, I think they are popular because so many of us have seen the effects of older versions of cancer treatments. We hope that there can somehow be a way to go through treatment without side effects, without the problems that come with treatment. And alternatives promise all of that. 

But without the long testing that comes from the clinical trial process, it's hard to know just how effective and safe those alternatives are. I'd rather take my chances with science. 

On the other hand, complementary medicine takes some alternative practices and uses them in conjunction with science-based treatments. It recognizes the strengths of those treatments, but also their limitations. Lymphoma Action is helpful here, too, in describing what complementary medicine is all about. You can learn more about practices like acupuncture, aromatherapy, massage, mindfulness, yoga, and art and creative therapy.

None of things will cure cancer. But any or all of them can help you deal with side effects -- physical, emotional, spiritual. 

And caring about those things is what Holistic Therapy is all about -- treating someone as a whole person, with all of those dimensions. It all fits together.

As I have written about recently, I've been thinking a lot more about survivorship lately -- what happens when treatment is "finished," and how much (or how little) support we receive when that happens. Good survivorship support focuses on the physical, the emotional, and the spiritual. They are all damaged by the experience of being a cancer patient. Not just the treatment itself, but the whole experience. 

And so, Holistic Therapy is something to be considered, and today is a good day to think about. The Lymphoma Action article is a good place to start.

Take care of yourself. Your whole self.

Too Bad.....

Well, for every clinical trial for a wonder drug like Rituxin or an improvement like Zevalin, there are probably 100 attempts at something else to treat or cure cancer that don't work out. I came across another one this week, and it really bummed me out that it probably isn't going to work.



A guy named Dr. Bill Cham has a new book out called The Eggplant Cancer Cure; his website is EggplantCancerCure.com. According to the web site, "Dr. Cham has found substances which can penetrate and kill skin cancer cells but can’t penetrate normal skin cells, so normal skin cells are untouched and unhurt while the skin cancer cells die!" He claims to have conducted extensive studies on a cream he made (called Curaderm), which contains substances derived from eggplant. The cream is rubbed on skin cancer tumors (including late stage melanoma), and in a period of months, reduces the tumors and cures the cancer. He claims it has cured 70,000 skin cancer patients in Australia, and he's working on a way to make it work on internal tunors as well.



By the way, he isn't an M.D, he has a "Ph.D. in Medicine." And we all know how useful a Ph.D. is....



It all sounds great, but there are some problems. He claims that the cream has been through Stage I, Stage II, stage III, and Stage IV clinical trials, but apparently, there isn't any published record of them. His website lists a bunch of publications supporting Curaderm, but some have titles like The Skin Cancer Cure So Effective, It's Being Kept Secret. There's a nice critique of Cham and Curaderm from a blog called Respectful Insolence, which looks at a lot of cancer cure claims like this.

I'm a little skeptical of any cancer cure that's being kept a secret.

There are two important lessons to be drawn from all of this:

1) There are a ton of cancer cure claims online. I know someone who's pushing some kind of juice on me that costs $40 a quart. But there's no real evidence that it actually wortks, apart from some personal testimonials. I can't afford $40 juice, and I can't emotionally afford "cures" that may or may not work. I have no problem with alternative medicine and natural cures, and I avoid drugs of all kinds unless I absolutely need them. An apple a day really does help keep the doctor away. I'm an antioxidant freak. But part of the problem with follicular NHL, in terms of alternative and natural cures, is that it's so slow growing, and it waxes and wanes, that it's nearly impossible to isolate something and say it's the cause of the improvement. Very frustrating. But I still eat a lot of fruit anyway.

2) I really wish eggplant was a cure for cancer. As my brother can attest, our Mom makes the best eggplant parm in the world. It's come up on the blog more than once. In fact, if eggplant provided a topical treatment for skin cancer, my brother and I would rub eggplant parm all over ourselves. And frankly, it wouldn't be the first time someone has done it.

The author of the Respectful Insolence blog does not completely discount the idea that compounds in eggplant can help skin cancers, he just wishes Dr. Cham would submit the treatment to more rigorous testing than Cham has been willing to do. As you know from reading the blog, I'm very willing to be part of a clinical trial. So I hearby volunteer to consume my mother's eggplant parm every chance I get, in the hopes that it can help provide data for researchers working for a cure.

Just doin' my part.

Cannabis and Cancer

I saw an article a few days ago that caught my attention. It's from The Guardian, written by an oncologist from Australia, and it's called "Patients keep asking if they should take cannabis for their cancer. The answer is still no."

That title -- with it's "No" at the end -- reminded me of a sign that I saw once in a doctor's office. The doctor was a pain specialist, and I was there with a loved one. The sign said, in big letters, "If you are using marijuana for any reason, WE WILL NOT TREAT YOU!"

Those are both very strong statements from doctors, and they show clearly how against cannabis use some doctors are. 

I remember asking the second doctor (the one I had taken a loved one to see) why he was against marijuana use. "Are you using it?" he asked me and my loved one. "No," we said, which was true. "Good," he replied. And that was the end of the conversation.

That doesn't seem very helpful from a doctor, especially if they have such strong feelings about it. A sign like his should open a conversation, not shut it down. The whole interaction was, unfortunately, pretty typical of this doctor.

The first doctor, the one who wrote the article linked above, is a little less dramatic about the whole thing, and I think her article is worth reading. She also has strong beliefs, but is also clear about why (there is little evidence that cannabis helps with pain, nausea, sleep, or other cancer-related problems, at least in the research that she lays out). But she also links to the ASCO document that came out about a month ago, called "Cannabis and Cannabinoids in Adults With Cancer: ASCO Guideline."

The ASCO recommendation are pretty much what the author has to say, providing a "nonjudgmental" approach to patients, because patient use of cannabis has "outpaced the research." In other words, up to 40% of cancer patients are using it, whatever the research says.

And the problem is that there is so little research. Blame this on marijuana remaining a Schedule I substance in the United States, meaning it is considered to be among the most dangerous, addictive drugs we know. As a Schedule I substance, there are sever limits on the kinds of research tat can be done on it. It's been a catch-22 for a very long time -- there isn't enough research to show that it might have benefits for people, but there can't be more research because it's considered dangerous.

An FDA panel has suggested that it should be moved to a Schedule III substance, but so far that hasn't happened.  

I'm fond of ASCO, as you all probably know, and their guidelines make sense to me. 

There is no evidence that cannabis can cure any type of cancer. That might not be the case if and when it goes through more clinical trials, but for now, there's no evidence. I would never suggest cannabis in any form be used Alternative Medicine -- in place of an approved, tested treatment for cancer. I'm not a fan of Alternative Medicines. 

But Complementary or Integrative Medicine? That's a different story. There is some evidence that some patients do get some benefit from cannabis use, whether for nausea, pain, sleep, anxiety, or other issues. If they get some benefit, and they obtain the cannabis legally, then what's the problem? Even if the positive effects are psychological rather than physical, there's a benefit there. 

I hope oncologists are open to the conversation, and are clear about the ASCO guidelines and what they say -- cannabis is not a cure-all, and it can do some good, but doesn't work for everyone and does have some side effects that need to be considered. You can say that about any substance, and any Integrative practice. 

I can't offer any experience with this -- I've never used cannabis for anything related to cancer. But I'd be very interested to hear about some of your experience, especially if it's used under a doctor's care (and it probably should be, just as your doctor should know about anything you take, from blood pressure meds vitamin D). I'd like to know if it's really as popular as research suggests, and if it really does work for people.

Share your stories if you're up for it.

 

Misinformation

I was doing a little research this morning, and while I was in the Yahoo! home page, I saw a link for "Health." Curious about what they had to day about cancer (I'm always curious about such things), I clicked some links until I found their page on Lymphoma.

It's horrible.

About a year ago, I wrote about a story that ABC News had done on NHL, in response to an actor dying. It made me very angry -- it was misleading, squished all 40 or so types of NHL together, gave some downright dangerous misinformation, and just generally did a horrible job or informing anyone about NHL.

The Yahoo! page is worse, in some ways (though not all).

They make the same mistake of conflating different types of NHL, but even worse, they squish Hodgkin's and Myeloma in there, too. They have links to the individual general types of lymphoma, but they're not much better: a list of symptoms.

The lymphoma page itself has just a weird mix of information. There is mention of the different types of NHL ("at least 10"), and their different classifications, but even here, there are problems:

"grouped (staged) by how aggressively they grow: slow growing (low grade), intermediate growing, and rapidly growing (high grade); and how far they spread."

 First, this is a misuse of the term "staged," which does have to do with "how far they spread," but not with how fast they grow. The "low grade/high grade" terminology is old; the preferred terms now are indolent and aggressive.

Under the "Diagnosis" section, the procedure that gets the most description is the Lymphangiogram, "an x-ray of the lymphatic system." True enough, but generally not done anymore. In fact, I've never heard of anyone getting one; they've been pretty well phased out, replaced by CT and PET scans.

The section on "Treatment" is devoted to acupuncture, hypnotherapy, and guided imagery. his comes after a paragraph saying that lymphoma is life-threatening, and you need chemotherapy and other traditional treatments. But then we get the alternative therapies for pain management. Eventually, we get the "allopathic treatments" -- that is, traditional Western medicine. Chemotherapy. Radiation. Bone Marrow Transplants.

Several problems here: First, radiation is used much less often in lymphoma -- at least in NHL -- than in other cancers. It's just too hard to hit a moving target, and that's what you have with a blood cancer.  Second -- no mention of Rituxan? When was this written, in 1997?

Guess what: I think it was. Because the last section lists the References for this article, and this is what we get:

BOOKS

Dollinger, Malin, et al. Everyone's Guide to Cancer Therapy. Kansas City: Andrews McKeel Publishing, 1997.
Fauci, Anthony, et al., eds. Harrison's Principles of Internal Medicine. New York: McGraw-Hill, 1998.
Murphy, Gerald P. Informed Decisions: The Complete Book of Cancer Diagnosis, Treatment, and Recovery. New York: American Cancer Society, 1997.

PERIODICALS

"Alternative Cancer Therapies Popular Today." Cancer. 77, no. 6 (March 1996).


Wow. The most recent thing you have on lymphoma was written in 1998?  Yahoo! was incorporated in 1995, so it's possible this article hasn't been updated since 1998. Is it seriously possible that this article hasn't been updated in 14 years? Yes, I think it is indeed possible.

My only consolation is that few people have probably read this, anyway.

At least I hope so. But what if there are more people who turn to Yahoo as their information source? Yes, unlikely; they'll more likely to go to WebMD or even Wikipedia. But what if they don't?

The internet is a wonderful thing. But for a page that purports to try to help people -- on a site that is trying to focus more on content -- this is inexcusable.

Please, please look to multiple sources for information. Go to Lymphomation.org. Join a support group. And don't believe everything you read -- especially if it's 14 years old.

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.

Interview with Dr. John Leonard

Patient Power has a new video interview with Dr. John Leonard from Weill Cornell Medicine. Dr. Leonard is asked about important Lymphoma research reported at ASCO and the European Hematology Association's annual meeting. It's about 20 minutes long, and worth the time.

Some highlights (in my opinion):

The big news in Follicular Lymphoma research these days is the RELEVANCE study, which looked at how R-Squared (Rituxan plus Lenalidomide/Revlimid) compared to Rituxan plus chemotherapy.  As Dr. Leonard points out, the trial tried to measure superiority -- in other words, the researchers hoped to show that R-squared was better than R-chemo. In the end it did not, but it did seem to show that R-squared had about the same effectiveness as R-chemo, with different side effects.R-squared seems to be a good alternative to R-chemo. (The Lymphoma community seems hopeful about all of this, though they recognize that the trial did not meet its endpoint.)

What came next is a great example of why I like Patient Power so much. Dr. Leonard was interviewed by Andrew Schorr, Patient Power founder, and a 20+ years survivor of CLL, another slow-growing blood cancer.

Schorr asked about expenses. Chemo is often over and done with after a period of weeks or months. But some newer treatments are taken daily as pills, and over time, they can be more expensive than chemo. Dr. Leonard recognized that it's a major issue. I've heard the phrase "financial toxicity" to describe this -- when researchers give the results of a trial they are required to report on physical toxicity -- the side effects that come with the treatment. But we rarely hear about the financial side effects. I love that Andrew Schorr brought that up.

Schorr also asked about CAR-T, one of the other topics that Lymphoma folks have been excited about lately. Dr. Leonard pointed out that, right now, only acute Lymphomas have seen trial results (though these include aggressive Transformed FL). He thinks they are very helpful for some patients (they have certainly been helpful for Ben and for William's wife -- I've mentioned them before, and you can read about their experiences and more on CAR-T at the CAR-T and Follicular Lymphoma Blog.

Despite their successes, Dr. Leonard tells his patients that about 1/3 of people who take CAR-T have a durable response, lasting more than a year. Another 1/3 have a shorter response, less than a year. And about 1/3 don't have a response. And he also makes clear that there are some potentially serious side effects. And, more importantly, he considers this the "1.0 version" of CAR-T, and thinks it will keep improving as researchers learn more about it.

Schorr then asks Dr. Leonard what he would tell a brand new FL patient if the patient asked if he was hopeful about the future.

Dr. Leonard, I am happy to say, is very hopeful about our future. He has seen outcomes improve over the last few years, and we still haven't seen long-term results for some more recently approved treatments. He expects things will keep getting better for us (and he encourages us to pay attention to clinical trials to see if there are any that might be appropriate for us, and move us all along).

Finally, Schorr asked what kinds of questions a new patients should ask an oncologist. Dr. Leomard has some good advice, including asking about what the goals of the treatment might be.

I encourage you to watch the whole video to see what else he has to say.

ASH Review: Mosunetuzumab (Bi-Specific) for FL

As I have said a couple of times, there weren't really any game-changing presentations at ASH for Follicular Lymphoma. But the one that I am seeing the most commentary on is for research on the Bispecific treatment called Mosunetuzumab. 

The specific session is "127 Mosunetuzumab Monotherapy Is an Effective and Well-Tolerated Treatment Option for Patients with Relapsed/Refractory (R/R) Follicular Lymphoma (FL) Who Have Received ≥2 Prior Lines of Therapy: Pivotal Results from a Phase I/II Study."

To remind you: A bispecific is kind of like a monoclonal antibody (such as Ritixan). It can recognize and attach to a protein on the surface of a cancer cell (like the way Rituxan attaches to CD20). But the bispecific has something extra. The other end also attaches to something -- a T cell, a powerful immune cell (that's the "T" in "CAR-T"). So a bispecific ("bi" means "two) can bring two things together -- a cancer cell and the immune cell that can kill it. 

It's one of those treatments that oncologists get excited about. My own oncologist, Dr. H, has mentioned bispecifics to me a few times. Some say they might be a cheaper alternative to CAR-T treatments, since they use the same immune cells, but don't have to be created specifically for each individual patient. 

The ASH study is fairly small (a phase 1 and 2 trial), but seems to provide some important data about how effective the treatment might be. The patients in the study had relapsed or refractory disease (their last treatment didn't work, or stopped working after a while), and had already tried at least two other treatments.

90 Follicular Lymphoma patients were in the trial, and had already received a wide range of treatments, including chemo, inhibitors, stem cell transplants, and CAR-T.  In total, the Overall Response Rate was 78.9%, with 57.8% getting a Complete Response. Pretty good numbers. Some groups did particularly well, with POD24 (patients whose FL returned within 24 months of getting chemo) having an ORR of 83% and a CR of 55%. The median Progression Free Survival was 17.9 months.

Again, this is a relatively small study, but the numbers for effectiveness look very good. 

Of course, the second part of an early trial is looking at safety -- how bad were the side effects?

The most common Adverse Event was Cytokine Release Syndrome (also very common in CAR-T), though the researchers say most of those reactions were low grade (Adverse Events, or side effects, are grades from 1 to 5, with 1 and two considered low grade, and 3 to 5 being high grade, ore more dangerous. About 42% of patients had grade 1 or 2 CRS, while one patient had grade 3, one had grade 4, and none had grade 5.  Other common side effects included fatigue (36.7%), headache (31.1%), and some low blood counts. Two patients died during the study of causes that were not related to the treatment. Four patients needed to stop treatment due to side effects. The full list of AEs is available on the link to the ASH session.

I'm mentioning all of the AEs/side effects for a couple of reasons. First, I know I tend to not get into as much detail as I should (one of the problems with being a "look on the bright side" kind of person). But also because reader Shelley commented on my last post:

Bob, Have you seen this video, Q&A style, from: Noah Merin, MD, PhD, from the Blood and Marrow Transplantation Program and assistant professor of medicine at Cedars-Sinai Medical Center. I thought bi-specifics might be the next best thing compared to CAR-t, but from what he says about reactions to it, turns me off. I'm sure you've watched/read other specialists view on bio-specifics vs. CAR-T - what's your opinion?
Shelly  

I haven't seen the video, Shelley, and if you can put a link in the comments, I'd appreciate it.

The researcher who presented the data at ASH called the side effects "manageable," using a C1 inhibitor to manage the CRS. (The C1 inhibitor is a treatment that can help slow down CRS and keep the reaction from becoming harmful to the patient). 

I can't say for sure whether the side effects are risky enough to choose another treatment over this one. The commentaries I have read seem to agree with the researcher, and don' think they are serious enough to discount Mosunetuzumab. We need to keep in mind that this is a phase 1 and 2 study, so it's still fairly small, and a larger study might show that the side effects are better (or worse) than for this group of patients. The FDA and other regulators will ultimately decide whether or not the benefits outweigh the risks. 

There will be lots of post-ASH comments in the next few months; I'll be interested to hear what experts have to say about this (if anything). 

In the meantime, Shelley, please send a link to the video. Thanks.

 

R-Squared for Follicular Lymphoma

The New England Journal of Medicine today published "Rituximab plus Lenalidomide in Advanced Untreated Follicular Lymphoma." This is the official peer-reviewed publication of the research on R-Squared that was presented at ASCO in June.

That's significant. When research is presented at a conference, it's usually in a big room full of other researchers. They can ask questions, have discussions, etc. But it's all still kind of unofficial.

When the research is published in a peer-reviewed medical journal, it's worth taking more seriously. "Peer-reviewed"means that, before it is published, it is given to some other experts, who can look at it more deeply and make sure that the data that was collected is actually doing what the researchers say it is doing. 

So the research about R-Squared is now "official." 

R-Squared, in case you're new to all of this, is a combination of Rituxan and Revlimid (also known as Lenalidomide). This combination is significant, because neither of the two agents is traditional chemotherapy. If the combo is effective, it is a big step forward in one day eliminating chemotherapy. Instead, we'd rely on treatments that target cancer cells and not healthy cells (like chemo can do), causing, in theory, fewer side effects.

The results of the study show that the R-Squared combo is about as effective as chemo (R-CHOP, R-CVP, or R-Bendamustine). Both also received Rituxan Maintenance.

The numbers don't seem to have changed from the ASCO presentation, so you can read more detail from my post from May.

As I said in a post a few days after that, the authors of the study seemed to be very cautious in how significant this is. They do the same thing here. They are both effective options, and they both have side effects, though those side effects are different.

As I'm writing this, I'm starting to see a few medical sites publishing stories about it, and most seem to be pushing the idea that R-Squared is as effective as the R+chemo is was compared to. 

That's good. The question now is, what comes next? Since this comes from a phase 3 trial, we can assume that the combination will be put up for approval by the FDA and other regulatory bodies at some point, and the numbers suggest it will do pretty well. 

From there, it will be up to oncologists to recommend it to patients, as an alternative to chemo, as a first treatment. If enough do that, it could really change the way FL is treated. 

Time will tell. For now, it's more waiting an seeing. But definitely something to be hopeful about.