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.

FL Webinar on Clinical Trials

Some webinar news for you all -- the Follicular Lymphoma Foundation is sponsoring a webinar on clinical trials on Tuesday, July 23, at 8:00am Eastern Time (U.S. and Canada) -- that 13:00 BST, 14:00 CEST, or 20:00 AWST​.

The webinar is called "Understanding Follicular Lymphoma Clinical Trials."

I know a bunch of you are part of the FL Facebook group, and you're probably ware of this webinar already (since the administrators of that group are very involved with the FLF). But I encourage you to take a second look at it if you're not already registered.

One of the really nice things about the FLF is how international they are. Sometimes when I write about a webinar, I get the feeling that some folks are excluded (or feel that way) if they aren't from the U.S. But since the FLF involves people from all over the world, they make a point to do their best to make the webinars accessible to as many people as possible. I appreciate that about them.

As the webinar description says, this is an opportunity to learn more about clinical trials, and especially about trials for FL. You'll hear from some medical experts, and also from other FL patients who will talk about their experiences.

I think that's a really important combination. I know many people have questions about clinical trials -- about trials in general, and specific trials for FL -- and there will be a chance to gt them answered.

But I also know that even those answers from experts don't always calm some patients' fears. So hearing from other FL patients is so important. There's so much misinformation about trials out there. I have had several loved ones who have had cancer, and who were told about clinical trials, and they resisted -- they were afraid that they would "get the sugar pill," meaning a placebo. But that's just not how cancer trials work -- you'll always get treatment that will potentially help you. Sometimes cancer patients don't fully understand that.

And unfortunately, many times the people who should be giving patients information are the ones who cause confusion. In the past, I have worked with some pharmaceutical companies and other health organizations, providing feedback on their websites and other patient-oriented materials. It's amazing to me how bad and confusing some of those materials are when I see them. I hope my suggestions have helped clear up the confusion. But I know they don't always take my advice.

The point is, at this webinar, you'll hear directly from folks who can tel you how trials work from a medical/scientific perspective, and from patients who have been through the experience. You'll get some good information. (You can read more about the different speakers here.)

And this is a good time to remind you all that research cannot move forward without clinical trials, and patients to participate in them. We all love to read about new treatments. They give us hope. But trials are the only way we all get access to exciting new treatments.

You can register for the webinar here. I hope you'll give it a look.

Survivorship Services

 The Journal of the American Medical Association Network Open had an interesting article last week about survivorship services at cancer centers.

I've been thinking a lot about survivorship lately -- what happens to cancer patients after they are finished with treatment. Lots of patients feel abandoned by their healthcare team, even though they continue to deal with physical, emotional, and psychological issues after they are "finished" with treatment. That's partly because their healthcare team is focused on diagnosing and treating, and they aren't trained to handle what comes afterward. 

At the same time, I'm also aware that most cancer centers do provide survivorship services. So I think this is partly on the patient, too -- lots of us probably want to put all of the cancer stuff out of our minds and try to "move on," even though we have those constant physical and emotional reminders.

The JAMA article is called "Cancer Survivorship Care in the United States at Facilities Accredited by the Commission on Cancer," and it looks at the survivorship services offered at 384 cancer centers in the U.S. that are accredited by the American College of Surgeons Commission on Cancer, which has required a survivorship program in order to get the accreditation. About 70% of cancer patients in the U.S. are treated at one of these accredited centers.

The results of the research are pretty interesting, and confirm that contradiction, that patients feel like they are abandoned even though survivorship programs are common.

The research involved a survey sent to the 1400 cancer centers that are certified, with 384 responding. 

The survey found that most survivorship programs include nurses (87%) and social workers (72%), and some also included physical therapists (47%) and occupational therapists (23%). All of that makes sense -- these are the folks who can handle the physical and psychological issues that come with being a survivor. 

The most common services that are provided include screening for new cancers (87%), nutritional counseling (85%), and referrals to other specialists (83%). Other services include creating survivorship care plans (43%), sexual health (57%) and fertility services (57%). 

It was more common for treatment teams to deliver survivorship services (63%) than for a separate survivorship clinic (31%).

About 80% of the cancer centers surveyed thought they were doing a good job with survivorship services. Still, while many cancer patients use survivorship services, the centers also recognized that there were many that did not. They said lack of referrals and low patient awareness were the biggest barriers to their services being used more often.

I find that especially interesting -- while the survivorship services are successful, it's often an internal issue that keeps them from being used -- oncologists aren't telling patients to use the services. And most programs do rely on the treatment team to provide services, rather than a separate clinic. Of course they are likely to be focused on treatment rather than what comes afterwards.

The issue of the journal that the article appears in also includes a commentary about it. Essentially, the research article says that the survey is valuable because it provides a baseline -- a way of measuring how much such services might improve in the future. 

But the commentary goes further, and says the time to act is now. We have data to show what works and what doesn't. Relying on a passive approach isn't working -- basically waiting for patients to ask for help. A more active approach would be much more effective, making a survivorship care plan an expected part of the treatment process. It's not a matter of the patient asking for help (which is useless if the patient doesn't know that help exists). It should be a matter of a survivorship team being brought in whether the patient asks for it or not. 

Personally, I was not made aware of survivorship services when I was finished with treatment. But that was 14 years ago, when those services were much less common, and I was treated by a private practice, not at a cancer hospital. Things are certainly different now, and the cancer hospital I go to has a well-regarded survivorship clinic available.

I think the lesson is that, as with most of our lives as cancer patients, we have to be proactive. We need to know what our options are -- whether that means available doctors or specialists, treatments, or post-treatment services. Help is there. We just need to know what to look for, and where to look.

Cancer Vaccines

 I just got my print issue of CURE magazine, and the cover story is about cancer vaccines. 

(You might have seen CURE in an oncologist's office. It's aimed at patients, published by the same folks who do the OncLive website for oncologists. You can get your own subscription for free.)

Interestingly, the website Breaking Cancer News, which I wrote about a few weeks ago, also had a series of stories on cancer vaccines recently. 

I've always found the idea of a cancer vaccine kind of fascinating, for one good reason. Sixteen years ago, soon after I was diagnosed, I went to a lymphoma specialist for a second opinion, and he talked about some of the new treatments that were being developed. It was not an entirely happy appointment, and the whole experience actually put me into a deep depression for a couple of weeks. But he also said some other things tat have stayed with me since then.

And one of those things was that he told me "Anything you read about online is already out of date," meaning that by the time a new treatment is being written about, it's already been in development for a while, and by the time results are published in a medical journal, the research has probably already been presented at a major conference. It was his way of saying there were lots of great things happening in Follicular Lymphoma research. That was the start of my fascination with lymphoma research.

Another of the things I remember was his excitement about one particular treatment -- a possible vaccine for FL. It unfortunately didn't work out, which is true about every other attempt at a cancer vaccine. (Here's some nostalgia for you -- a Lympho Bob post from 10 years ago talking about a failed vaccine, and another from a year before that on why cancer vaccines had been unsuccessful up to that point.) 

Interestingly, some of this is covered in the CURE article (which is in the print edition this week, but which appeared in CURE Today, the online edition of the magazine, about a month ago).

The biggest difference between the older, failed attempts at a vaccine, and the newer ones that CURE calls "a marvel," is the approach. Newer vaccines (which are currently in clinical trials) use mRNA technology -- the same platform that several Covid vaccines were built on. 

In fact, the reason the Covid vaccines were able to be rolled out so soon (though it didn't feel soon at the time) was because the technology had been developed years before in attempts to create a cancer vaccine. With the basic technology in place, the Covid researchers had to kind of swap some parts, and that let them develop the vaccine.

You might remember how the mRNA vaccine works (being the science nerds you probably are). Thin back to high school biology class. DNA is the blueprint for everything in our bodies (I'm way oversimplifying here). The structure of DNA is a double helix -- a kind of corkscrew. To duplicate itself, DNA sort of unzips, and RNA comes in and attaches to the open zipper and makes a copy of it. The mRNA that is used in vaccines does the same thing. It can be programmed to create a protein that produces an immune response in the body, one that will be able to work against cancer cells.

The CURE article does  a better job than I do of describing this. So does this video from Nature, the prestigious science journal.

Watch that video -- it gets into a few other approaches to cancer vaccines besides the mRNA approach. There are still some barriers to having all of this actually work.

That said, there seems to be enough interest in the last few months, from a bunch of different sources, to make it worth keeping an eye on. I still have good memories of the hopefulness that I felt when that lymphoma specialist mentioned them to me so many years ago.

Pan Mass Challenge

I'm about to ask you for money.

Once again, my brother will be riding in the Pan Mass Challenge on August 3 to raise money for cancer research at Dana Farber Cancer Institute in Boston. The Pan Mass Challenge is a bike ride that covers much of the state of Massachusetts (which is why it;s called Pan Mass). Riders get donations for completing the ride.

My brother began riding in the PMC in 2008, and he has personally raised well over $80,000 in that time. Since it began in 1980, PMC riders have raised over $972 million. The PMC is the largest source of funding for cancer research at Dana Farber. 

My brother was injured last year and wasn't able to ride, but he's healthy and ready to go this year. 

Some of you have donated in the past, which I greatly appreciate. You might have already received a fundraising email from my brother. If not, you can see a copy of his email below, with a link to his fundraising page.

I don't like being asked for money, and I don't like asking, either. But this is research that benefits all of us. (Last year, the PMC raised about $72 million, and about $8 million went to blood cancer research. That's a very significant chunk of money.)

So if you are able to donate, please consider doing so. 

Thank you.

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

This year on August 3rd, I will be joining over 5,000 cyclists riding for my 17th year in the Pan Mass Challenge, riding 85 miles  from Wellesley to Bourne  to raise research funds for the Dana Farber Cancer Institute in Boston. 

As many of you may know from sponsoring me in the past, this cause is especially personal to me as I have had several immediate family members and close friends that have been diagnosed and treated successfully for many different types of cancers.  Some,  like my brother Bob, have been beneficiaries of the breakthrough research that has been conducted at the DFMC.

2024  marks the 45th  anniversary of the PMC, and this year, cumulative fundraising will reach over  $1 billion donated for cancer research and treatment at Dana-Farber.  The majority of this impressive total is considered unrestricted support -- critical, flexible funding that can be directed where and when it is needed most. As the PMC generates nearly half of the Jimmy Fund's annual revenue, every rider supports the efforts of more than 3,000 DFCI faculty and staff members as they make countless advances that have become the standard of cancer care and research.

I’m asking you to join me in the fight against cancer by sponsoring me in my ride with the 2024 Pan Mass Challenge.  The doctors and researchers at the Dana Farber Cancer Institute in Boston are making tremendous progress in finding a cure for this terrible disease, but we need to continue to fund the fight and bring this to an end.

The easiest way to donate is to give on-line.  The PMC site is a secure site. 

 To give on-line, you can go to the following link to my personal fundraising site:

 http://www.pmc.org/profile/MM0386

Many thanks,

Mike

 

A Thank You

I didn't announce it when it happened a few weeks ago, but I was named a Finalists for the Social Health Awards. I was nominated for several of them, but after the first round of judging, I made the finals for the Revolutionary Researcher Award. They describe that one as being for online health advocates who "refuse to let medical jargon and data slow them down! The winner of this category stays up-to-date on the latest research, treatments, and clinical trials. This winner has a knack for transforming complex information into layman's terms for the greater community."

If I was going to win one, that would be the one I'd want to win for. Alas, I did not win this year.

And I didn't expect to. Even before they started judging, I looked at the other nominees for the award, and I guessed who was likely to win. And I was right. She's kind of awesome. It was a very good group of winners this year in all categories.

But this gives me the chance to thank you all - those of you who nominated me for the awards and who were able to vote for me. Recognition like this isn't necessary, but it's really nice when it happens.  

And a thank you to all of you who read the bog, and leave comments, and email me. All of that is even more important than awards. I always say I would write the blog even if no one was actually reading it, because it's good for me to keep up with what's happening in the world of Follicular Lymphoma. But it's even nicer knowing you're all out there.

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My posts were shorter than usual over the last week, and that's because I was away on vacation (though still checking up on FL World because I can't help myself).

I was in Maine, in Bar Harbor and Arcadia National Park, with about 30 or so family members for a reunion.

I don't know if any of you are from Maine, but my goodness, what a gorgeous state it is. We did lots of hiking, ate some lobsters, drank some good local beer, and just enjoyed being with each other. 

Arcadia is stunningly beautiful, and I was struck by how very different the landscapes were, just a few miles from one another. Rocky mountain trails, then evergreen-covered coast, then traditional New England fishing village. Always something interesting to look at.

(If you're familiar with Arcadia and curious, we did the Mount Gorham Loop, Wonderland Trail, Bar Island, and  Jordan Pond. Each more beautiful than the last.)

 

 

I don't have many "cancer moments" these days -- those times when you stop and gaze and you're aware that you're alive and you feel lucky. Being 16 years out from my initial diagnosis has made those moments less frequent.

But I had a few of them this past week. Walking the Wonderland Trail, at about 50 yards from the coast, I suddenly felt the air get just a little cooler, and the smell of salt hit my nose. I love that smell. You can't help but stop and focus on the moment and forget about everything else and just enjoy what's all around you. That to me is a "cancer moment." And smelling that salt air and then walking a few more steps and seeing this just brings it all into even more focus:

And then, at night, sitting with loved ones and playing a silly game and laughing together, you have another of those nice moments. You just stop and appreciate that life is good.

It was a very good week. I hope you all get the chance to have those moments every now and then.

I'll get back to "refusing to let medical jargon and data slow me down" in a day or two. I'm going to enjoy that last bit of salt air first.