ASCO Abstracts Are Here! (plus, Survivorship!)

Huzzah!

ASCO has published their abstracts! It's like Cancer Nerd Christmas!

If you have no idea what I'm talking about, ASCO is the American Society of Clinical Oncology. It's the largest professional group for oncologists in the United States. Every year in late May or early June, they have their annual meeting. It's the largest gathering of oncologists in the U.S., and it's where many researchers present their work -- results from phase 1, 2, and 3 clinical trials, theoretical work, research on cancer biology that might lead to clinical trials. This year, the meeting is taking place May 29 to June 2. 

About a week or two before the meeting, ASCO releases the abstracts -- the summaries for all of the presentations.  The people who go to the meetings use the abstracts to decide which presentations they want to hear and see, so they can more details. I have never been to an ASCO meeting -- it always comes at the worst time of year for my job. (The other major meeting for blood cancer research, ASH, comes in December, at the second worst time of year for my job. When I retire, I'm going to go to all of these cool meetings.)

The ASCO Abstracts were released yesterday, so I can finally see all of the cool new research that is being presented. Like I said -- it's Cancer Nerd Christmas.

I did a quick search on the Abstracts page for Follicular Lymphoma, and 29 presentations came up. That's a little less than in the past, and a few more may show up, but there are definitely a few that are worth paying attention to.

Over the next few weeks, I'll write about some of the abstracts tat look particularly interesting. And while the conference is happening, and in the days after it is finished, there will be lots of press releases and video commentary about the presentations that are most significant, so I'll write about those, too. It's usually about a month or so of ASCO news from here. It's all very exciting.

So I might as well start with an abstract right now: "e24130: Living after lymphoma: A retrospective study of survivorship outcomes from a tertiary cancer centre in rural India."

On the abstracts page, you can sort the results in a few different ways, but the default for me was "Top Rated." I don't know who is rating the abstracts or how they are rated, but I thought it would be interesting to go down the very bottom and see which one was apparently rated last (whatever that means).

And so we have "Living after lymphoma: A retrospective study of survivorship outcomes from a tertiary cancer centre in rural India."

If you've been reading for a while, you've picked up that the idea of "survivorship" is becoming much more important to me lately. Many cancer patients complain that they get excellent care when they are diagnosed and in treatment, but after all of that is over, when they are "finished," nobody seems to care. So there are many cancer centers that have Survivorship Clinics that help cancer survivors deal with the long-term physical, emotional, and mental challenges that come when cancer is "finished."

So this particular title, with "survivorship" as part of it, certainly caught my eye.

It looks at 100 Lymphoma patients in a cancer center in rural India who were diagnosed between 2012 and 2022. They were diagnosed with several different Lymphomas, including Diffuse Large B-cell Lymphoma (45%), Follicular Lymphoma (17%), Hodgkin Lymphoma (20%), and others (18%). Almost all were treated with some kind of chemotherapy (97%). Other treatments included radiotherapy (20%) and autologous Stem Cell Transplant (9%). The researchers collected information about the patients, including "demographics, disease characteristics, treatment exposures, metabolic parameters, endocrine function, bone health, cardiovascular events, secondary malignancies, and psychosocial outcomes."

They found a wide range of long-term issues that the patients had to deal with: Metabolic complications like obesity (40.4%), hypertension (31%), high cholesterol or triglycerides (56%), diabetes (31.1%),  hypothyroidism (8.4%) and vitamin D insufficiency or deficiency (76.5%).

Other health issues included osteopenia (37%) and osteoporosis (23%). In addition, "Two patients developed new-onset left ventricular dysfunction, three experienced cerebrovascular events, and two developed premature cataracts before the age of 50. Two patients developed tuberculosis post-treatment. Second primary malignancies occurred in two patients." Finally, "Psychosocial impact was notable, with five patients remaining unmarried and one experiencing marital disruption attributed to fear of recurrence and social stigma."

The researchers conclude that greater survivorship care is needed for patients in rural India.

I'd say that is probably true no matter where we live.

I look at that list of issues, and almost half of them apply to me as well. So I'm not sure it's a problem confined to rural India. One difference might be that I may have better access to treatment of those long-term health issues. My heart-related issues are under control because I take a handful of pills every day. 

But I have to say, I see very little research on the long-term side effects of cancer treatment. Or maybe I should label them "very long-term side effects." After that 5 year mark, there isn't much attention being paid.

I guess the attitude is "Hey, you're alive after 5 years. Of course you'll have some health issues from treatment. And there is only so much time and money available for research, so we need to put our focus elsewhere." That's true, but if nothing else, more attention paid to very long-term side effects might mean more attention is paid to Survivorship and to the resources that are already available and under-used. (Read about research on survivorship services from a couple of years ago.)

I think I'd feel better if this presenttaion wasn't at the bottom of the "Top Rated" list." 

Wasn't that a good one to start with? Lympho Bob is feeling a little salty, as the kids say. 

I'll be sure to look at the top of the "Top Rated" list soon. I'm sure it will be much more exciting, and I'll have more positive things to say.

It's still a great Cancer Nerd Christmas, and I'm ready to open some more presents. 

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.

 

Can Diet Cure Lymphoma?

I came across an article from the Cleveland Clinic, and excellent hospital in Ohio, with this very provocative title: 

"Can Diet Cure Lymphoma? Foods to Eat and Avoid."

Before we go any further, I'll give you the answer: No. Diet can't cure Lymphoma. That's the answer in the article, and it's the answer that any other article that's actually based in science will give you. Other answers are probably trying to sell you something, or are being very optimistic. But as much as I'd love to tell you that eating tons of broccoli or tumeric or something else will cure your Lymphoma, there's no evidence that shows that it will.

I have mixed feelings about that title. It's very close to being "clickbait," the kind of title for an online article that promises something that it doesn't deliver. I don't think a hospital should be doing that. 

On the other hand, if the point of clickbait is to get you to read, then maybe it's a good thing. If someone is looking online for information on diet and Lymphoma, better that they get accurate information from the Cleveland Clinic than from someone who is telling a personal story about their experience. 

(If you've never read such a story, they go like this: "I have eaten a bean sprout sandwich, and nothing else, every day for two years, since the day I was diagnosed with Follicular Lymphoma, and my FL has not progressed. In fact, my nodes have gotten smaller."  But the problem is, FL is slow-growing, and nodes can shrink on their own, so the bean sprout sandwich doesn't have anything to do with it. And as I written before, I have a hamburger and french fries about once a week, because it makes me happy. But I'm not going to claim that I've gone 13 years without treatment because of red meat and fried foods. That would be ridiculous. But it's the same logic.)

So what does the article say about diet?

A few really good, useful things.

Some diets can help prevent cancers like Lymphoma. (That's prevent them -- keep you from getting them. That's not the same as curing them once you have them.) Diets that are heavy in plants are especially good for you. The article recommends the Mediterranean Diet. Lots of fruits and vegetables, legumes, whole grains, nuts and seeds, and fish. Cut back on red meat, animal fats, and sugar. (And yes, I know I just told you that animal fats and red meat make me happy. Do as I say, not as I do.)

Also, if you're in treatment, it's important to eat a healthy diet. If your treatment makes it heard for you to eat, then eat the things that you are able to. Fruits and vegetables are especially important -- find the ones that you like. And if you are losing weight, focus on calorie-dense foods like nuts and full-fat diary.

In addition, diet is important after treatment as well. For many patients, treatment results in muscle loss. More protein can help get it back.

As for supplements, if a patient is eating a healthy diet, then supplements probably aren't necessary. But it's important to pay attention to Vitamin D levels, says the article.

Finally, the article mentions some diets that Lymphoma patients should NOT follow, especially if they are in treatment. These include the Keto diet, which the Cleveland Clinic says s the opposite of what they recommend for some Lymphoma patients. Also not recommended: an "alkaline diet," where a patient only eats non-acidic foods, on the theory that cancer likes an acidic environment. But the body doesn't work that way -- it keeps a balanced pH (not too acidic and not too alkaline) no matter what you eat. Diet just doesn't have that kind of effect. Other diets that people read online can be problematic because they don't provide a balance of nutrients.

The bottom line: Our bodies are complicated. And cancer is complicated, too. As much as I would love to be able to eat one thing, or avoid a few things, to cure my cancer, it's just not that easy. If it was, we'd all be cured by now.

And as helpful as this article is, the best person to talk to about all of this is your oncologist. As I've said many times, I am not a doctor or a cancer researcher. Don't take cancer advice from me alone. Your oncologist can offer advice about diet, or can get you the name of a dietician who can work with you. Lots of cancer hospitals have Survivorship offices that offer just this kind of advice, so ask if it's available to you.

But if you want my advice, then here it is -- eat healthy all week and get some exercise every day. And when you do have that hamburger once in a while, don't feel bad about it. You have enough to worry about.

Vitamin D and Magical Thinking

I saw an article this morning on Vitamin D and Large B Cell Lymphoma, and I had to share and comment. Not necessarily about the research itself -- it doesn't have much of anything to do with anyone reading this blog -- but because of the reminders it gave me about a bunch of issues related to my experience as a cancer patient.

The article is called "Vitamin D Insufficiency and Clinical Outcomes with Chimeric Antigen Receptor T-Cell Therapy in Large B-cell Lymphoma: Vitamin D insufficiency and CAR-T in LBCL," and will appear in the journal Transplantation and Cellular Therapy. I won't get too much into the details, but here's the study:

(To be clear here -- this is NOT a study involving Follicular Lymphoma patients.)

The researchers (there are a lot of them) wanted to know if blood levels of Vitamin D had an effect on CAR-T in LBCL patients. This is an observational study, not a clinical trial. In other words, they looked at a bunch of patients in one cancer center, rather than developing strict criteria for who could be a part of a study. They ultimately looked at 111 patients with relapsed or refractory LBCL who were about to be treated with CAR-T. They divided the patients into two groups -- one for patients with low vitamin D levels, and the other for patients with normal levels.

They found that, after 100 days, the Response Rate was 55% for the low Vitamin D patients, and 76% for the normal Vitamin D patients. After 2 years, the survival was 41% (low) and 71% (normal). They also found that the T cells that were taken from patients and then changed and put back into the patients were more viable for the patients who had normal Vitamin D levels. In other words, the cells lasted longer and worked better when Vitamin D levels were normal.

The authors were very clear that this was a very narrow study, looking at patients in one cancer center, and the idea that Vitamin D might help LBCL patients getting CAR-T needs to be studied more. Interesting study, but we can't get too excited about it.

That said, I'm excited about it. And that's kind of a problem.

I've been interested in Vitamin D and its relationship to cancer for a long time. There really isn't any definitive research that says Vitamin D will help cancer patients -- and certainly no research that says it will cure cancer. But it seems like there are enough small, focused research studies that, if you put them all together, like pieces of a puzzle, they suggest that there is a connection between the two.

And here's why it's a problem that I think that way.

It's bad science. And I value science and what it tells us about cancer treatments. But a whole bunch of studies that say "maybe, kind of" isn't the same as one study that says "Yes!"

All of this just reminds me of what makes it hard to be a cancer patient. It's a constant battle between the head and the heart. Science tells our heads that something is or isn't true, and our rational sides can understand that. But then there's the heart -- the emotional side -- that wants something easy and safe to be true. There's always a little bit of magical thinking in all of us. A teaspoon of turmeric, or a broccoli sprout sandwich, or 20 minutes on a trampoline every day will keep the cancer away. If only it was that easy. But I'm pretty sure it's not. 

And that's my complicated history with Vitamin D. I've been taking it for years. I've read enough about how Vitamin D might help a whole bunch of health issues that I'm too invested to think it won't help. This is called a "sunk cost fallacy." People refuse to change their minds about something because they've spent so much time and effort believing in it that they don't want to give up on it.

And since I've been taking Vitamin D for about as long as I have gone without treatment, it's easy to connect the two. (That's another fallacy -- correlation doesn't equal causation. I also had a big change happen at work at the same time. By that logic, I could say the change in my job is what caused my cancer to go away. I can guarantee that wasn't the case.)

So for me, the big lesson here is not to tell you to give up on magical thinking, and only do things that are backed up by science. That would be a little hypocritical. 

The lesson is that we need to choose which things we think magically about. I have real problems with patients who decide not to go with conventional treatment like chemotherapy or immunotherapy, and instead think that massive doses of vitamin D or bowls of broccoli will cure them. That strikes me as foolish, when there is science to back up that it could be effective in keeping you alive.

But going through chemo, and then switching to a vegetarian diet, or taking fish oil and Vitamin D, or exercising 60 minutes a day? Sure. None of those "extra" things will harm you, and most will help you stay healthier, even if they don't have any effect on your cancer. 

And maybe more importantly, apart from the long-term benefits that they might have, sometimes we just need something magical to get us through the day. Maybe it's a broccoli sprout sandwich. Maybe it's calling yourself a "cancer warrior." Maybe it's saying a prayer to St. Peregrine. There's no way that science will tell you it works. But maybe it helps us be at peace, even for a little while.

So I'm going to keep taking my Vitamin D. Please don't ask me what my levels are, or how much I take each day. I'm not here to give you medical advice. Ask your doctor if that's something that might help you.

But also trust that some things are OK, even if your doctor, or some other rational person who hasn't lived your experience, tells you otherwise. 

LRF Forum: Survivorship

Part 2 of what I learned at this year's Virtual Annual North American Educational Forum on Lymphoma from the Lymphoma Research Foundation.

As I said last time, I attended a session on Follicular Lymphoma, given by Dr. John Timmerman. Some of the good stuff he talked about was on survivorship -- what happens after treatment is done. I also attended a full session on this topic given by Dr. Carrie Thompson from the Mayo Clinic. 

I've mentioned Dr. Thomspon in the blog before (like in this post about Patient-Reported Outcomes). I really like her a lot. The research she does is focused less on treatments than on patients, and what happens to them during and after treatment, and how the profession of oncology can do a better job of dealing with the human elements of cancer. She's really great.

Her session at the forum was called "Now that I have lymphoma: What can I do?" The focus was on how lymphoma patients can control certain things in their lives to help themselves feel better, mentally and physically. That's especially important for many of us with Follicular Lymphoma, who may have to wait months or years between treatments. Staying as healthy as we can during those times can be very important. 

My notes weren't as good as I would have liked, since I was trying to pay attention to what Dr. Thompson was saying, but I'll share some of what she said.

The things that we can do for ourselves to hep control some of the stress and anxiety that comes with a diagnosis include 

• Exercising (as Dr. Timmerman noted last week, it helps reduce stress and assists the immune system). She recommends that her patients do some ind of aerobic exercise 3-5 days per week. Even walking is fine. Try to build up to 30-60 minutes a day, and doing it in small chunks (5 or 10 minutes at a time) is great. Aim for 7000 to 9000 steps a day. Strength training is important, too, a couple of days a week. And so is flexibility and balance training, like yoga or stretching. Even if 9000 steps seems far away from where you are now, getting up and moving every day is helpful. And have fun with it.
  
• Eat healthy. Dr. Thompson recommends the Mediterranean diet for her patients. Here's a link to a description if it from Dr. Thompson's Mayo Clinic, but if you're unfamiliar, it involves eating lots of fruit, veggies, whole grains, and healthy fats; getting protein from fish, poultry, beans, and eggs instead of red meat; limiting dairy; limit sugar; and having an occasional glass of wine. And coffee is OK, too. The "diet" isn't really set, with specific numbers or portions of specific foods. It's more of a general approach to eating. And, she was clear, no diet is going to cure anyone's cancer. But this approach can help keep you healthy.
• If you are feeling anxious, do things like exercising to manage stress. If necessary, talk to your doctor about getting some help, like a social worker or other mental health professional. I've said it before -- Follicular Lymphoma is an emotional disease as much as it is a physical disease. For many of us, we have way more emotional or psychological symptoms than physical symptoms. Be sure to take care of them, too.
• [And let me just mention this, while I have your attention. Around here, this is "Movember," not just November. Men stop shaving and grow mustaches to call attention to men's health. That includes mental health, all you men. Don't let notions of manliness keep you from getting help if you need it. You're not helping anyone by hiding how you're feeling. Ask for hep if you need it. That's a message from me, Bob, not from Dr. Thompson, but I'm sure she'd approve.]    
• Coordinate your care. Make sure your oncologist is talking to your regular doctor (internist, general practitioner, or whoever else you see regularly. Don't assume your health needs are all taken care of if you only see your oncologist. He or she won't be paying attention to things that are not cancer-related. And make sure those two doctors are communicating. Electronic records make this a little bit easier, but my regular doctor and my oncologist use two different systems, so I make sure to give both of them updates about what the other is doing.

Dr. Thompson also took some questions. Concerns about Covid were on people's minds. Dr. Thompson said there still isn't a lot of data on how Covid affects cancer patients (while it feels like we've been dealing with it forever, it's been less than a year, and data collection takes time). She does think if your blood counts are normal (especially lymphocytes), you are probably colser to the general population for risk. But she still urges us to be careful.

As for a possible Covid vaccine, she is anxious to see the data from the trials, but she is confident that the FDA would not allow a vaccine to be available unless if was safe.

Someone asked about supplements. Dr. Timmerman, in the earlier session, cautioned about using supplements without getting an OK from the doctor. Dr. Thompson pointed out that there aren't any studies that say supplements will sure anyone's lymphoma. There is, however, some evidence that Vitamin D deficiency can lead to worse outcomes in lymphoma patients. It's worth noting that it's not the same as saying good Vitamin D levels leads to better outcomes. Just the same, a supplement isn't a bad idea, especially as we spend less time outside in the sun. Talk to your doctor.

So lots of good stuff about how to take better care of ourselves. It's exhausting to think about, at times like this, for me, anyway. I'd much rather watch Netflix and eat cookies than eat more vegetables and get up and move, but I have a goal of being around for many years and not being miserable in the meantime. So I do what I can. I hope you do, too.

Are Dietary Supplements Harmful?

 Interesting research from a few weeks ago. We like to think that dietary supplements can hep us, but sometimes they do the opposite for cancer patients, and can actually hurt us.

The article, titled "Dietary Supplement Use During Chemotherapy and Survival Outcomes of Patients With Breast Cancer Enrolled in a Cooperative Group Clinical Trial (SWOG S0221)," lwas published in the Journal of Clinical Oncology, and looked at the use of dietary supplements by breast cancer patients who were being treated with chemotherapy.

The study looked at 1,134 patients, and found (maybe surprisingly) that using antioxidants before and during chemo increased the chances of the cancer coming back after treatment. These included vitamin A, vitamin C, vitamin E, carotenoids (like beta carotene), and Coenzyme Q10. Patients taking antioxidants during chemo had a 41% higher chance of the cancer coming back than those who didn't take them.

Other supplements besides antioxidants were also problematic. Patients taking Vitamin B12, iron, and omego-3 fatty acids also had a greater risk of recurrence and death.

Patients taking a multivitamin seemed unaffected by it.

So what's the deal? Aren't dietary supplements supposed to be healthy?

Yes. Usually. Full disclosure -- I take a multivitamin, vitamin D, and fish oil every day. I don't plan on stopping.

The issue is that the patients in the study were being treated with chemotherapy. While the study called for more research on why exactly these supplements had the effect they did, it might be easy to guess why, in a really general way. Antioxidants help keep cells healthy. Chemo is meant to kill them. There's kind of a basic mis-match there. If you're a cancer patient who is trying to kill cancer cells, it doesn't make sense to take something that helps prevent damage to them. There's no evidence that a supplement can distinguish between healthy cells and cancerous ones.

To be clear -- that's my own observation, not something from the research.

A few important things to consider here.

First, the researchers say that, while the results are interesting, the number of patients in the study who were taking single supplements was pretty small. So while more may have been taking a multivitamin, the amount of (for example) Vitamin E in that multivitamin was much smaller than it would be in a straight Vitamin E supplement. Not many patients were taking those straight supplements. A larger, more focused study would be helpful.

Second, this study obviously focuses on breast cancer, not Follicular Lymphoma. We can't say for sure that the same results apply to our disease. Though if my general idea of why supplements make for worse chemo outcomes is really true, then maybe so?

Third, the study looks at chemotherapy, not other types of treatment like radiation or immunotherapy. There's no evidence that they would hurt, or that they would help, people taking those treatments.

Here's the real lesson, I think -- we should talk to our doctors about the things were are taking. All of them. Prescription medicines, over-the-counter medicines, supplements, herbs that someone recommends, whatever. Because even the medicines or supplements that we take to help us with one condition might have a negative effect on another. Unless we know the way those things interact with each other, we won't know if they're ultimately helping us or hurting us. The best person to ask about that isn't a friend or a Facebook ad or a well-meaning co-worker. It's your doctor.

Now, back to my own supplements. As I said, I take a multivitamin, Vitamin D, and fish oil every day. I don't take any of them because I think they will prevent or cure my cancer. I've been taking a multivitamin for years, and I continue mostly out of habit. I do believe that if I stopped, I'd be fine, especially since I'm being better about eating vegetables and fruit. I've been taking the fish oil for a while, too, mostly for heart health. I could probably stop taking that, too; it hasn't done anything for my blood pressure, which has gone up in the last few years.

Vitamin D? Hmm. I started taking that a while ago, too, but it also wasn't to prevent or cure cancer. I'd been reading about its benefits for lots of conditions, and its importance to general health, so I started taking it, with the encouragement of my doctor. Like the other supplements, the upside seemed bigger than the downside -- they're relatively inexpensive, they might help, and they probably won't hurt. Since I started, there has been some suggestion that Vitamin D levels might have a positive effect for FL patients. But like everything else related to supplements and cancer, there just isn't enough evidence either way to know for sure.

So here's what I do not want to happen. I do not want any of you writing to me and asking me how much fish oil or Vitamin D I take, or what brand of multivitamins I buy. I won't give you an answer. I won't add to the false hope that a certain vitamin D dose will help you. That's not my place to say.

If you want advice about supplements, ask your doctor, She's the best one to get advice from. She'll know about your other conditions, and how supplements and medications will interact with each othr, and what you might need for your general health. And if anyone else offers you advice about supplements and cancer and says they know for sure that something will help, I suggest you read what they say very carefully, ask for real scientific studies to back up the advice (on actual people in clinical trials, not "in vitro" or in test tubes), and then run it by your doctor.

In the meantime, if I do come across any other research that gives answers about how to make us healthy, you can believe I will pass it along.

Sunshine, Vitamin D, and Lymphoma

Interesting research from the journal PLOS One on Lymphoma and Vitamin D: Can spending time in the sun keep you from getting Non-Hodgkin's Lymphoma?

Please notice that I'm asking that as a question. I'm not entirely sure the answer is Yes (though that is what the researchers conclude).

The study is called "Vitamin D Status and Risk of Non-Hodgkin Lymphoma: An Updated Meta-Analysis."

As the title says, this study is a meta-analysis. That means the researchers didn't conduct a study on patients, the way many studies are done. Instead, they looked at a whole bunch of other studies that other people had done, and then came to a conclusion about what all of those studies might tell us.

That has some advantages (there's a lot of data from a lot of patients at different times), but also some disadvantages (different studies might have been conducted in different ways, using different methods, maybe with patients that are not very much alike, so they are hard to compare. As the researchers make clear, many of the patients in the studies they looked at were caucasian, and from North America).

I think that's important to be clear about before we get into this. They did NOT take two large groups of patients, make sure they were similar, and then compare them. They basically did a Google search of medical journal articles that mentioned vitamin D, sunshine, lymphoma, and related keywords, and then compared the results that they found.

(But, also,to be clear, that doesn't mean that kind of study doesn't have some value, either.)

The study looked at 30 other studies, involving over 56,000 NHL patients, looking at exposure to sunshine, Vitamin D intake through diet or supplements, and Vitamin D levels in the blood.

They found that people with high sun exposure had a smaller risk of developing NHL and various subtypes (including FL). Taking vitamin D supplements or getting it through food (which is pretty hard to do) didn't have any effects. Supplements are OK, but the body doesn't absorb the Vitamin D as easily as it does with the vitamin D that gets created by sun exposure.

I know this is a popular topic for a lot of you. There is some evidence that Vitamin D levels are important in preventing lymphoma, and for keeping it in check. It's not enough evidence to have oncologists say it's something we must all do (and this meta-analysis doesn't say that, either). So I don't recommend sunbathing as a lymphoma treatment.

But, in the interest of full disclosure, I will say that I do take Vitamin D every day. And since someone is going to ask, I'll tell you that I take 5000mg a day. My doctor recommended Vitamin D years ago, and I used to take 1000mg in the summer (when I got more sun exposure) and 2000 in the winter (when I got less). Two years ago, my levels were low, so she recommended I go up to 3000 year-round. I went with 5000 because it was easier to take one pill that three 1000mg pills.

I live in the northern United States where the sun isn't as strong as other parts of the world. I am fair-skinned, and I don't spend a lot of time in direct sunlight, because I don't need to add skin cancer to my list of health issues.

So, to be clear: I don't think my Vitamin D levels have anything to do with my status as a Follicular Lymphoma patient. In other words, I don't think taking Vitamin D is the reason I haven't needed treatment for 9 years. I take it because I've read enough about the health benefits -- many of them, that don't include cancer -- and my doctor recommended it. It's an easy, and (for me) inexpensive thing to do, and that makes it worth the chance that it will help me.

As with everything, it's good to do some research, and then talk to your doctor about what you've found out. I'm not a doctor, so my experience should not be taken as medical advice.

It's also good to remember that there are no shortcuts to curing or controlling cancer, and a 25 cent pill or a day at the beach probably won't do that job.

But Fake Dr. Bob is happy to give you this prescription: on a sunny day, put on some sunscreen and a hat and sunglasses and spend a little time outside. Go for a walk. Weed your garden. Pick some fruit. Feel the warmth on your face. Remember and enjoy little things that make you appreciate being alive, even if it's just for a few minutes.

ASCO: Vitamin D and Follicular Lymphoma

Interesting research from ASCO: A look at whether Vitamin D helps extend Event Free Survival for Follicular Lymphoma patients.

It's not really "research" yet, since there are no results. But there was a presentation at ASCO on the study,which is called ILyAD (Indolent Lymphoma and Vitamin D). Clever name. I'll do my best to resist any puns on the Iliad, that great Ancient Greek poem about the Battle of Troy.

But bad puns are kind of my Achilles' heel.

(Dang it. Sorry.)


In all seriousness, the abstract for the presentation is called "ILyAD (Indolent Lymphoma and Vitamin D): A phase III double blind, prospective randomized trial to evaluate the supplemental effect of vitamin D on progression-free survival in patients with low tumor-burden indolent non-Hodgkin lymphoma treated with rituximab therapy."

It builds on some research that's been done in the last few years that shows that there might be a connection between low Vitamin D levels and Overall Survival, and Event Free Survival within 12 months. I wrote about it last fall, and if you want to see more, you can use that cool Search feature that I moved to the top of the blog and enter "Vitamin D.")

The ASCO research describes a phase III clinical trial. It is still recruiting, if you're interested -- you can find more about it here.

Basically, the researchers are looking more directly to see if there is a connection between Vitamin D and effective treatments. About 2/3 of the patients will get Rituxan (4 weekly doses), plus 2000mg of Vitamin D every day. The other 1/3 will get the Rituxan, but no Vitamin D. After 13 weeks, patients will be evaluated, and if the treatment isn't working, they'll be taken off the study to try another treatment. But if there is a response, they will continue for 3 more years to see if the Vitamin D group does better.

"Does better" will be measured by Event Free Survival, with an "event" being no response at week 13, having the disease get worse, needing a new treatment, or dying.

Again, the study is actively recruiting now, so there are no results to report.

But I think there is a big lesson to learn from it.

Vitamin D is one of those things I read a lot about -- there are many people who think it has some miracle properties that will take care of a long list of health problems. I will freely admit that I take Vitamin D every day. Every time I tell a doctor that I take some, or my wife tells a doctor the same thing, we get a thumbs-up. We hear it often enough to think we're doing a good thing by taking Vitamin D.

Do I think I've gone over 8 years without treatment because I take Vitamin D every day?

I have no idea.

And that's the point.

Without rigorous study of treatments, we have no idea what works.

A few days ago, a friend of mine who is a breast cancer survivor posted a link on Twitter, a story about a social media personality who has been saying that her veganism and her belief in God cured her cancer. Unfortunately, she died when the cancer came back.

I'm not going to link to the article, because it's a little too gleeful in its "I told you so" tone. That's not helpful to anyone.

Being vegan can be a good thing, especially if it gets you to pay more attention to what you are eating, and it gives you incentive to be healthier.

Belief in God is also a good thing, especially if it brings you comfort and helps you pay more attention to the needs of others.

But neither of them has been proven to cure cancer. Not in any rigorously tested way.

Same with Vitamin D. I believe in miracles. I think there are things that can't be explained.

But for every 1 in a million miracle, there are 999,999 instances where the miracle didn't happen.

So if I have a choice between a miracle and a treatment that induced a response in 65% of patients, I'm going with the 65%. Much better odds.

I'm hoping this research on Vitamin D does show us something. Wouldn't it be great if we could make treatments more effective by taking something that costs about 5 cents a day?

But we need the research to show us that it's really true.

That, to me, is the lesson.

(Also, consider participating in a clinical trial when you need treatment. Otherwise, there are no lessons for anyone to learn.)

Happy New Year

Wishing you all a Happy New Year.

Remember what I said a week ago -- it's time for new beginnings. Do something, be someone that you haven't had the courage to do or be. If it doesn't work out, forgive yourself and try again.

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

I'll be taking about a week off, starting today. No new posts. I might even get away with not thinking about cancer for all of that time.

And I'm going someplace warm with no internet access. In the Northeastern United States where I live, it's about 6 degrees F right now (that's about -14C). I need some sunshine and the Vitamin D that goes along with it.

I'll tell you all about it when I get back. There may be new beginnings for some things, but the Lympho Bob blog isn't going anywhere.

See you in a week.

Vitamin C and Follicular Lymphoma

So while we're on the subject of Vitamins and Lymphoma, let's talk about Vitamin C.

In my last post, I wrote about a recent study involving Vitamin D -- it showed that low Vitamin D levels might result in lower survival rates for Follicular Lymphoma. The researchers admit that more study is needed on this, so don't go swallowing bottles of Vitamin D pills just yet. Talk to your doctor about checking your levels and why it's important.

The journal Cell recently published a heavy research article on Vitamin C called "Restoration of TET2 Function Blocks Aberrant Self-Renewal and Leukemia Progression." When I say "heavy," I mean it has some serious discussion of cell-level processes and genetics. Cell is not a journal about clinical oncology and how doctors treat patients. It's about what goes on in our cells, on the smallest level -- the normal and the abnormal.

So I was happy to get some help with this heavy stuff from an article on Lymphoma News Today, which included some explanation from the researchers in the study.

Apparently, Vitamin C has been an alternative treatment for cancer for a long time -- people think that taking lots of it will stop their cancer. While there is some truth to that (Vitamin C was shown to kill cancer cells in a test tube), research in 2008 on real people showed that giving a large dose of Vitamin C by infusion had few side effects, but also had no effect on cancer. But there was some suggestion that maybe Vitamin C needed some help if it was going to work.

The recent article in Cell helps explain why. Basically, one of the ways that blood cancers form is because of a problem with an enzyme called TET2. When TET2 isn't doing its job, stem cells can't turn into white blood cells. Think of stem cells as baby cells that are supposed to grow up in to different kinds of adult cells. TET2 helps that happen. When TET2 doesn't work, the stem cells don't grow up, but they don't die, either. They go into the blood stream and take up room and cause problems.

So when TET2 isn't working, your body is basically overrun by mutant zombie babies. Let that image sink in for a minute.

Vitamin C seems to help TET2 work again the way it is supposed to by blocking the thing that makes TET2 stop working. No more zombie babies.

But the Vitamin C needs help, too. The researchers found that something called a PARP inhibitor helps the Vitamin C do its job. Inhibitors of different types are becoming more common in all kinds of cancers, including Follicular Lymphoma. The PARP inhibitor stops a protein from fixing DNA in cancer cells, causing them to die. A PARP inhibitor is used now on some kinds of ovarian cancer.

The lymphoma connection here is that there is at least one PARP inhibitor being tested on Follicular Lymphoma.

All of this sounds great. But like the Vitamin D study, there needs to be a lot more research. All of the work done for this article was done on mouse models. there are a lot of steps that need to be completed before this is ever shown to be safe and effective on real FL patients.

So that's the good thing about this study -- we might have an actual treatment strategy come out of it someday (years from now).

In the meantime, while you are avoiding the Vitamin D section at the pharmacy, go ahead and avoid the Vitamin C section, too. At least until you talk to your doctor about whether or not you need Vitamin C for something other than cancer.

Bottom line, as always -- stay informed, talk to your doctor, and if a cancer "cure" sounds too good to be true, it probably is.

Vitamin D and Follicular Lymphoma

The Blood Cancer Journal just published an article "Vitamin D Insufficiency is Associated with an Increased Risk of Early Clinical Failure in Follicular Lymphoma." This isn't the first study on Vitamin D and FL, and it builds on the others in some important ways.

Let's go back a couple of years first. In 2015, the Journal of Clinical Oncology published a study on Vitamin D and FL that said low blood levels of D were associated with lower Overall Survival in patients who had been given Immunochemotherapy (Rituxan or RIT + CHOP). There were lots of alarming headlines in the cancer media about the study, and is the case too often, many of them misrepresented what the study actually said. I wrote about it in the blog -- the study's conclusion said "serum vitamin D might be the first potentially modifiable factor to be associated with FL survival." Might be. It was an interesting study that called for more research before we could know for sure.

The Blood Cancer Journal study gives us some of that research. But let's get this out there right away -- even these researchers say we need more research ("Further investigations are needed to determine whether outcomes could be improved in FL by supplementation with this readily available vitamin.")

I know I haven't even gotten to what's in the research yet, but I think it's really important to make sure, near the beginning of this post, to remind everyone to not jump to conclusions. I've been reading a lot of stuff online lately where people are taking small bits of information about cancer and making them into Big Things that they aren't. This study isn't saying Vitamin D will cure your cancer. I want to be clear about that.

So, about that research.

The researchers looked at 642 Follicular Lymphoma patients who were enrolled in the study between 2002 and 2012. Unlike the earlier JCO study, which looked only at patients who were given R or RIT + CHOP, the patients in this study had a number of different treatments, including R + chemo (CHOP, CVP or Bendamustine), but also straight Rituxan, watch and wait, and other treatments (which they don't list separately). That range of treatments is important, given that there really isn't a standard treatment for FL.

The researchers measured whether low Vitamin D levels had an effect on Overall Survival, Lymphoma-Specific Survival (whether lymphoma was the cause of death), and EFS12, or Event Free Survival at 12 months (this same research team had found that EFS12 was a predictor of Overall Survival -- that is, having FL get worse or come back within 12 months was a sign that Overall Survival was lower than with other patients).

The results (after a median follow-up of just under 5 years) --
For patients given R + chemo, low Vitamin D levels were associated with lower Overall Survival, Lymphoma Specific Survival, and EFS12.
For patients who watched and waited, low Vitamin D levels were associated with lower Overall Survival, but not EFS12. Lymphoma Specific Survival could not be calculated.
For patients given just Rituxan, low Vitamin D levels were NOT associated with lower EFS12, and Overall Survival and  Lymphoma Specific Survival could not be calculated.
When all patients receiving any kind of Rituxan treatment were lumped together, low Vitamin D was associated with all three -- lower OS, LSS, and EFS12.

The researchers are careful to say that more research needs to be done to confirm all of this, though they are especially hopeful that the study can help patients with low EFS12. While different studies have shown that low EFS at 12 or 24 or 30 months can predict low Overall Survival, the challenge is finding a treatment that can help those FL patients with an aggressive form of the disease. Maybe low Vitamin D levels are one way to help?

There are no easy answers here, as the calls for more research demonstrate.

But from my perspective as a patient, I would say that asking your doctor about your Vitamin D levels is probably a good idea. My own doctor (my regular doctor, not my oncologist) had me start to take Vitamin D supplements many years ago, and I continue to take them. She thought D levels were important for lots of reasons (none of them related to Follicular Lymphoma). Did my good D levels help when I took Rituxan? Have they helped me not need treatment since then?

Who knows? Follicular Lymphoma is a funny disease, and it goes down such a strange path that it's hard to know if any of the things we do (aside from actual treatments) have any effect. Follicular Lymphoma is like a toddler on a walk through the woods. It runs ahead sometimes, then stops and looks at bugs, then walks back in the direction it started, then lies down and cries in the grass, then walks ahead again. Same with FL, with its slow progression, waxing and waning, speeding up a little and slowing down again. We really can't know if our diet or exercise routine or supplement regiment is really doing anything for us. We really can't put our hope in something we can buy from a grocery store.

That said, ask your doctor about Vitamin D. It's worth having that conversation.

Appointment with a New Oncologist

I had an appointment today with a new oncologist. I think I'm going to keep him.😀

First, let me say that my check-up went well. It was the usual -- blood work, a physical exam, and my reporting on how I am feeling. Everything looks great. Blood is normal, I feel fine, and he didn't feel anything weird. I'm good for another 6 months.

Now, a little history, since the focus here is on finding a new oncologist. My first oncologist was Dr. R. I saw him for 8 years, starting on the day after I was diagnosed. I loved Dr. R. He was young, he was well-informed, and he was friendly. I actually looked forward to going to the oncologist. But then he broke my heart and moved to warmer climates, taking a job at a medical school. I miss him. But he seems happy.

After Dr. R, the practice assigned me to Dr. K. I did not like Dr. K very much. He was nice, but he didn't listen, and that was the biggest problem. He seemed to have a rehearsed speech for my visit, and if I tried to tell him I knew about things he was telling me (basic things like what a PET scan was, or the 3 different types of blood cells), he didn't notice or care and just kept talking. During my last visit, he insisted that I get a PET scan. I asked why, and he told me that he didn't think he would find anything on the scan, but he wanted me to get one anyway. I'm a relatively young man with a few scans already under my belt, and I don't think a scan is useful for me at this point, and could actually do more harm than good. But he insisted. At that point, I decided it was time for a new oncologist.

Interestingly, I got a letter from the practice that Dr. K had retired in December, and I would need to find a new oncologist anyway. That might explain some things. He really seemed like someone who had lost interest in the job. As I said, he was a nice guy, and probably had some patients who liked him a lot. But he just wasn't what I needed.

So a month ago, I got a call from the practice. They wanted me to schedule an appointment with Dr. V. The practice I go to is one of about 10 satellite practices for a large teaching and research hospital, attached to a medical school. Most of the oncologists at the satellite practices are clinical oncologists -- their job is to see patients. At the main research hospital, the oncologists see patients, but also do research, conduct clinical trials, and teach at the medical school. Dr. V is one of those oncologists. He works at the main research hospital, and would come to the satellite campus one day a week to see patients.

So I said Yes to an appointment with Dr. V. And I'm glad I did.

Before I describe the appointment, let me say that I know that I am lucky to be able to choose  my own oncologist. I know there are lots of cancer patients who can't choose. Maybe they live an an area with only one oncologist nearby. Or maybe their health care plan doesn't give them a choice. I'm sorry that's the case for people, and I wish it was different. I'm lucky to be in a situation where I can choose my oncologist, at least to some extent.

My visit with Dr. V opened with a review of my current medications. We made some small talk as he looked up my record on the computer (he's a fan of jazz music, and I conveniently have a son who is a jazz musician). As he looked at my medications, he asked why I was taking vitamin B-12. I told him that I had been taking another medication that was causing B-12 problems, but that I had taken myself off of that medication because I was reading about too many side effects. "Well, then maybe it's time to stop taking B-12, too, huh?"

That's a small but important comment. One of the things I liked about Dr. R was his "Do no harm" philosophy -- if there wasn't a good reason for a treatment, or a scan, or some other intervention, then we wouldn't do it. It's what led to my watching and waiting for two years instead of starting on treatment right away. I liked that Dr. V seemed to be taking the same approach.

As we went through my history, that was reinforced. He said he probably wouldn't have given me Rituxan at two years. I explained that I had the Rituxan because of some swelling in my leg, and he agreed that it was a good idea (the notes he had from Dr. K were not very detailed). But that was another example of the n"Do no harm" approach that I liked.

Another example came a few minutes later, when we were discussing my next appointment. He saw that I was getting an appointment every 4 to 6 months. He said, "I really think you could probably stretch this out to a year. We can do 6 months if you'd rather not wait that long, but a year would probably be fine." I said I'd rather do 6 months, which he said was OK. He continued: "I see that Dr. K ordered a PET scan. I'd like to cancel that." I said, enthusiastically, that I was fine with cancelling it. He went on: "We don't do scans like that anymore. Older doctors still believe in surveillance scans, but younger doctors have been trained differently. We worry about too much radiation leading to secondary cancers 20 years from now."

So I was happy about that. He reminded me a lot of Dr. R -- young, friendly, and informed, with a philosophy that matched my own. I was happy that I say him.

But what really clinched it for me was what happened next. We were finishing up, and he asked if I had any final questions. I said, "Yes, just one. As a hematologist, is there anything that excites you about lymphoma treatments these days?"

His eyes got wide, and he said, "LOTS!" 

And then he talked to me for 15 minutes straight about what excited him about lymphoma. It was glorious. He didn't dumb it down. But he explained it well. And I did my best to let him know that I understood and was interested.

He told me that he started out as a leukemia specialist, but he switched to lymphoma because he liked his boss so much. But he was glad that he did, because advances in treating leukemia have kind of stalled, but there are lots of interesting advancements happening in lymphoma.

He went through some of the stuff happening in aggressive lymphomas. The goal with all lymphomas is to move away from traditional chemotherapy, though that's hard to do with aggressive types, which do seem to benefit from chemo. But he did say that there were some exciting trials with Immunotherapies that were resulting in 80% response rates with 20-30% Complete Responses. Then he talked about other indolent lymphomas, like CLL and Mantel Cell, that had some exciting new treatments, like Ibrutinib.

And then he got to Follicular Lymphoma. He said FL was "complicated." The goal, as with other lymphomas, is to move away from traditional chemotherapy. There were lots of treatments out there being tested in trials, with different levels of success. He mentioned Idelalisib, which he was very excited about, but which also showed some severe side effects, leading to some trials being shut down. He was involved with one of those trials, and was unhappy about it, because he thinks Idelalisib shows some promise for Follicular Lymphoma.

He talked about another FL trial he is working with right now. The treatment is called G100, and as he described it, it is a vaccine that is injected into affected lymph nodes in one site of the body. The hope is that the vaccine will train the immune system, and it will then travel to affected nodes in other parts of the body. (I confess that I don't know much about this treatment. It's in phase I/II trials, so maybe it's too early to show any strong results. But I'll definitely keep an eye on it.)

And then he ended by saying that what he really loved about being an oncologist is that he can cure people. He has colleagues who are cardiologists. When someone has heart damage, they can help them, but they can't cure them. But an oncologist can. After my appointment, he was going to see someone who had been in remission for about 10 years. "I look at the scan from when he was diagnosed, and the scan from a month ago....the difference between them....it's like we're performing magic...."

You know how I sometimes post videos of lymphoma researchers who talk about treatments with so much excitement? I had one right in front of me. It was so cool.

That's what I need. And that's what I found.

It was a good visit.

ASH: Vitamin D and Follicular Lymphoma

Another interesting ASH presentation -- this one is called "Vitamin D Insufficiency Is Associated with an Increased Risk of Early Clinical Failure in Follicular Lymphoma."

I'm very interested in Vitamin D and FL, mostly because I take some every day, on the advice of my doctor. It's kind of a controversial supplement, in that some doctors get very excited about patients taking it, and others are more skeptical, and there are lots of studies that suggest it's a problem not to have enough, and others that aren't quite so sure.

For me, despite my mom's Italian heritage, I'm mostly of fair-skinned Scottish-Canadian ancestry, so I try to stay out of the sun. And that means my body isn't making Vitamin D naturally, so I take a supplement.

Before I go any further, let me be clear: I'm not suggesting that anyone else should take Vitamin D. That's my choice, based on my doctor's advice. You should talk to your own doctor about whether it's a good idea for you.

Also, I'm NOT suggesting that there is any research that says Vitamin D will cure your Follicular Lymphoma. It's easy to get excited about these kinds of potentially easy solutions, but nothing is easy with Follicular Lymphoma, as we all know.

So, on to the study:

Researchers looked at 642 newly-diagnosed FL patients. They wanted to figure out if low Vitamin D levels in the blood could predict if a patient would have early clinical failure (measured by Event-Free Survival at 12 months, or EFS12) and Overall Survival, as well Lymphoma-Specific Survival (death caused by Lymphoma and not something else). They were interested to see if low Vitamin D levels were related to how successful specific treatments were, too.

They found that in the entire group, low Vitamin D levels were associated with inferior EFS12, OS, and LSS -- all three.

The same was true of patients who had Immunochemotherapy (something like R-CHOP or R-B) -- inferior for EFS12, OS, and LSS.

For patients who were observed (watch and wait), low Vitamin D was associated with low Overall Survival, but there was not enough of a connection to say it was associated with EFS12 or LSS.

There were not enough events or deaths to measure any connections for patients who had straight Rituxan. (That's bad for the study, but good overall.)

Their conclusion: "We confirm previous findings that vitamin D insufficiency is associated with adverse long-term prognosis among patients with FL treated with IC, and extend these findings to patients who are initially observed or treated with other therapies.  For the first time, we observed an association of vitamin D insufficiency with early clinical failure, suggesting a potentially modifiable factor to address in this subset of patients with poor outcomes.  Whether treating VDI improves outcomes in FL warrants assessment."

In other words, having low Vitamin D levels can make things worse for you. But that doesn't mean having sufficient or high levels will make things better.

So, it's an interesting study with no firm conclusions, other than to talk to your doctor about whether your Vitamin D levels are OK, and whether or not it matters.