Tuesday, September 27, 2016

Advice on Watching and Waiting

Over the summer, Cancer Today did a piece on Watching and Waiting in blood cancers called "Treatment is Waiting."I missed this somehow.

Cancer Today is published by the American Association for Cancer Research, which is made up of cancer researchers. They publish a number of medical journals, but Cancer Today is aimed at patients, their caregivers, and their families.

The article is decent. It describes what watching and waiting is, and how and why it is used. The examples are patients with Chronic Lymphocytic Leukemia, or CLL, which is another indolent, slow-growing blood cancer, like Follicular Lymphoma.

The stories are familiar to a lot of us -- someone who is perfectly healthy gets a blood test that comes back a little funny, or notices a lump that won't go away. A few tests, and there's a diagnosis of an indolent blood cancer.Some discussions with the oncologist, and they agree that watching and waiting is the best choice. (The article provides a link with the blood cancers that are likely to involve a watch and wait option.) The article lays out some reasons why this treatment choice makes sense (and a bunch of us have heard them, too) -- the cancer is growing slowly enough that treatment is necessary right away, and holding off treatment means holding off its side effects, too. The article finished with some studies that involve watching and waiting, to see how that decision holds up against some newer treatments.

Like I said, I think the article is decent. And it's easy to wish a writer had a different purpose and made different decisions. But I wish an article in a magazine aimed at patients would have spent more time discussing the emotional aspects of watching and waiting. The focus is on clinical trials because it's from a group devoted to research. And trials certainly are important. But for patients making the decision to hold off on treatment, they need to know and understand that there is an emotional investment in this option. The purpose of the article was not to highlight that, so maybe it's a good time to look at it again.

The article does acknowledge that emotional aspect. One patient whose story is told did remark on how strange it was to hold off on treatment. And there's a link with "Tips for Blood Cancer Patients" that includes "Get help managing the anxiety that can sometimes accompany 
watchful waiting."

Sometimes accompany it? I haven't heard of anyone who didn't have some anxiety. There's a boatload of anxiety that comes with that decision. It makes no sense, to a new patient, to get a cancer diagnosis and then purposely "do nothing about it." It takes a long time to not worry about every bump, every red mark, every cough, when you are supposed to be "watching." It means a lot of lying awake in bed, wondering of you made the right decision, and dreading that you didn't, and panicking over the penalty that you'll pay as a result.

So, yeah, I'd say that some anxiety can sometimes accompany that decision. And I'd say that it's a good idea to "get help managing" it.

For me, as I've said before, that help came from an online support group. The people there had lots of different types of NHL, and even if their experience was different from others', they always had an encouraging word, and they were always there to celebrate the good things. And with hundreds of people there from all over the world, even with all those different types of NHL, there was always someone who did know how you were feeling, and did know what you were going through.

And I talk about the support group in the past tense, because even though I still check in every day, I don't post as much as I used to. Because that's another important thing to know about watching and waiting: at some point, you do stop worrying constantly. You don't stop worrying completely, but you sleep better, and you panic less, and decide that it was the right decision. Someone in the support once said that it takes about 6 months for that to happen. That sounds about right. Maybe a little longer, or shorter. But the worry doesn't last forever.

And if it does? If you just can't stand the idea of watching? Then get some treatment. There's no shame in it. If the oncologist recommends holding off on treatment, there's no rule that says you have to take that advice. There is no consensus in the oncology community that watching and waiting is the best choice. It's easy to find experts that say it's better to just treat right away. If you can't stand the idea of "doing nothing," then do something. Sleep better.

Watching and waiting is, in the end, all about maintaining a good quality of life. If that means holding off on treatment and its side effects, that's great. If it means having treatment and getting rid of your anxiety, then that's great too. It's about having some say in your own treatment and feeling good about that decision.

I'd be interested in hearing about your own decisions with watching and waiting, and how you coped with the emotional side of it all. And I'm sure some newer readers would like to hear it, too.


Thursday, September 22, 2016

Betsy de Parry

Since my last post was an article by Karl Schwartz, President of Patients Against Lymphoma (and Lymphomation.org), I'll keep the streak alive and post something from Betsy de Parry. Both Karl and Betsy, through their writing, were incredibly helpful to me when I was first diagnosed, and trying to learn more about my disease.

A few days ago, Betsy posted on Facebook that she was celebrating 14 years since her diagnosis with Follicular Lymphoma. 14 years! That's awesome.

To celebrate, Betsy posted a link to a video of a speech she gave four years ago, as she celebrated her 10th year. The speech was given at a Patient Education Symposium called "Follicular Lymphoma: On the Road to Cure" at Rush University Cancer Center in Chicago. She discusses her own story as a Follicular Lymphoma patient, the success she had with the RadioImmunoTherapy treatment Bexxar (yes, the one that isn't available anymore -- have you sent your email to the Senate HELP Committee yet?), and the ways she maintains hope.

It's a good video. You can watch it here.

If you're looking for a good read, Betsy is the author of the book Adventures in Cancerland.

Both Karl and Betsy are excellent advocates for Follicular Lymphoma patients, and deserve our praise and support. Thank you, both!\



Sunday, September 18, 2016

Help Save RIT (RadioImmunoTherapy)

I need you to read a short but important piece on RadioImmunoTherapy called "Limited Access to Radioimmunotherapy in the Community Setting May Lead to Extinction of a Unique Lymphoma Treatment" on ASCO Post.


It was written by Karl Schwartz, President of Patients Against Lymphoma (PAL), which runs the site Lymphomation.org (which I have linked to many times). PAL not only provides online information about our disease, but also does lots of advocacy work on our behalf. This article is part of tht advocacy.

As Karl explains in the article, the Nuclear Regulatory Commission requires doctors who administer RIT (such as Zevalin) to have 700 hours of training in nuclear medicine before they can do so. Zevalin works by delivering a tiny dose of radiation directly to a Follicular Lymphoma cell by holding on to a monoclonal antibody (like Rituxan) that finds FL cells. This lets radiation get to a cell that won't hold still for more traditional radiation treatments.

And RIT is effective: different studies have shown that patients have a 90% to 100% Overall Response Rate, and a 60% to 100% Complete Response Rate. Responses have lasted a median of 6 years in some studies. Because the radiation is delivered right to cancer cells, side effects are manageable. It's safe and it's effective.

And it might be going away. The 700 hours is fine for a nuclear medicine specialist, who will learn all about the full range of nuclear medicine options. But for a community oncologist (the cancer doctor whose office most of us go to), they don't need the full range of training -- only the few hours to learn how to administer RIT. This means most don't get the training, and we patients lose out on an effective treatment.

Bexxar, another RIT treatment, is no longer being produced. Not enough people were using it to make it worth it. Now Zevalin, the remaining RIT option for Follicular Lymphoma patients, is in danger of being discontinued.

We may lose an arrow from our quiver. A really good one.

Karl explains what we can do: "Contact the Senate HELP (Health, Education, Labor, and Pensions) committee and reference a patient-endorsed letter by Patients Against Lymphoma."

Read Karl's article (he makes the case better than I do). Contact the U.S. Senate HELP Committee. Help save another option for treatment of Follicular Lymphoma.

Wednesday, September 14, 2016

CAR-T in Advanced Lymphoma

An article was published last week in Science Translational Medicine called "Immunotherapy of non-Hidgkin's Lymphoma with a Defined Ratio of CD8+ and CD4+ CD19-specific Chimeric Antigen Receptor Modified T-Cells." It has some people in oncology very excited.

The study involves lymphoma patients (including a few Follicular Lymphoma patients) who have had lots of treatments that just haven't worked. But this one did for a lot of them.

The main treatment is called CAR-T (Chimeric Antigen Receptor T-Cells). I've written about them before, and there are at least a couple of readers out there with direct experience. CAR-T is a treatment that is being used in a bunch of trials, with a lot of success.

Cancer cells are able to do their nasty job so well because they can fool the immune system into leaving them alone. Instead of seeing the cells as the unwanted invaders that they are, our immune system (which normally gets rid of invaders) just lets the cancer cells hang out like they are normal cells. CAR-T works by letting the immune system know that cancer cells are bad, and should be gotten rid of.

A cancer patient's T cells are collected. T cells are immune cells in the blood stream that track down invaders. They can recognize invaders because of the features on the T cell surfaces (called Receptors) match up with features on the invader (called Antigens). When a T cell Receptor finds something with an Antigen that matches it, the T cell destroys it. So After the T cells have been collected, they are changed in a laboratory, so they have a special Receptor that will recognize the Antigens on the specific cancer cells that it is after. (This is why they are called Chimeric Antigen Receptor T-Cells. A Chimera, is you remember your Greek Mythology, is an animal made up of different parts: a lion's head, a goat's body, and a snake for a tail. Made up of different parts, and deadly -- a good name for this engineered T cell.)

So the CAR-T cells are created in the lab, and then grown so there are a few billion of them, and then put back into the patient. If they do their job well, they look for the specific Antigen on the cancer cell and kill those cells. But even better -- like all T cells, they also multiply in the body and stay there, so if new cancer cells grow, they can wipe them out, too. It's a great example of Immunotherapy -- using the body's own immune system to defeat the cancer.

What makes this study a little different is the way they used the CAR-T cells.

First, they gave the patients a combination chemotherapy called Lymphodepletion, a combination of Cyclophosphamide (which is the C in the CHOP chemo combination) and, for some patients,  Fludarabine (another chemo drug which has fallen out of favor in recent years). They call this combination "Lymphodepletion" because the purpose is to wipe out some of the White Blood Cells in the blood (including some T Cells), because there are so many of them that there's no room for the CAR-T cells. This seems to have been a big improvement over other attempts at using CAR-T cells. The patients in the study who had the two chemo drugs before the CAR-T cells had much better results than those who didn't have them: a 72% Overall Response Rate, and a 50% Complete Response Rate (the others who didn't have the chemo had a 50% Overall response and just an 8% Complete Response).

The other big change they made in this study was in the type of T-Cells that they engineered into CAR-T cells. There are a few different kinds of T-Cells in the body, and they do different jobs. This study used a mix of Helper T Cells (the CD4+ in the title of the study) and Killer T-Cells (CD8+). As you can guess, Helper cells help other cells by secreting proteins that help with the body's immune response. Killer cells do the actual killing. Both are necessary for a complete response (there are other types of T cells, too, but these two do a lot of the work in the immune system). By making sure that there were the same number of Helper and Killer T-Cells in the CAR-T sample, the researchers increased the odds that the treatment would work.

So in the end, it study found that CAR-T results are improved when the patient first makes some room for the CAR-T cells with some chemo, and then uses the right mix of cells.

In my EFS12 post from a few days ago, an anonymous reader pointed out that about 80% of patients will probably die with FL, not from it, and that the other 20% will be helped by CAR-T and some other therapies. I absolutely share that enthusiasm. As I said, there are a lot of people excited about Immunotherapy, and CAR-T in particular, and this study seems to have hit on some ways of making CAR-T even more effective.

There's still a way to go, of course. This was a small study (just 32 patients), and there were some side effects (including Cytokine Release Syndrome, where the body is overwhelmed by dead cancer cells and can't clean them up fats enough). But there is a lot of reason to be hopeful, as researchers will continue to refine things and develop even more effective ways of using the body's immune system to protect itself.



Friday, September 9, 2016

EFS12 (Event-Free Survival at 12 Months)

About a month ago,  two readers names Kevin and Tom had a conversation in the comments section. Kevin had some questions, and Tom had some very encouraging responses. (I really love to see that. As much as I enjoy hearing from readers that I am helping them, it's great to see people helping one another, too, and knowing that I played a small role to bring them together.)

In his response, Kevin said, "I was diagnosed in December 2014, and treated with B-R from January 2015.I was very motivated by a study published end of 2014, written by Maurer et al, dealing with Re-calibrating life expectancy after having an event free 12 month after diagnosis ( EFS12 )
Events here means no lymphoma progression, relapse, death, etc, not side effects of the treatment. That is really one of the most encouraging studies I have seen.
Maybe Bob has written about that earlier. otherwise Bob, I am sure many folks here would be delighted, if you could...:)"


How could I refuse a request with a smiley face at the end?

I looked back at posts from late 2014/early 2015, and I couldn't find anything about this study that I had written. It seemed familiar, though, so maybe I wrote about it when an earlier version was discussed at ASH or ASCO? I'm too busy to look any more, so I'll just write about it now. (I should look into getting some kind of a search function on the blog, too, to make this kind of thing easier to do, but I'm also too busy to do that.)

The article that Tom mentions is called "Event-Free Survival at 12 Months (EFS12) from Diagnosis Is a Robust Endpoint for Disease-Related Survival in Patients with Follicular Lymphoma in the Immunochemotherapy Era," and it was published in the journal Blood in late 2014.

The researchers were aware that some Follicular Lymphoma patients seem to better than others, and since Rituxan has been added to most treatments, Overall Survival numbers had been going up. However, they also knew that there was a smaller group of patients that seemed to have a more aggressive type of FL. Their goal was to figure out of they could tell which group was which, as soon as possible, to help figure out if aggressive treatment was needed or not.

They looked at a group of FL patients who were treated at the Mayo clinic over 10 years. Then they looked at a group of FL patients in Lyon, France, treated during roughly the same time period. they were especially interested in comparing Event-Free Survival (EFS) and Overall Survival (OS) -- if a patient didn't need treatment or didn't progress for a certain period of time (EFS), could that signal that they had a better chance at a longer OS? (And is the reverse true? Could a shorter EFS mean a short OS?)

They looked at almost 1000 patients with grade 1, 2, and 3a Follicular Lymphoma from the Mayo Clinic. (You probably all know that grade determines how aggressive the disease is, and 3a is closer to 2 than 3b, which is closer to an aggressive lymphoma than to an indolent lymphoma like FL. So we're basically looking at people who are less likely to have an aggressive type of FL, at least at diagnosis.)

EFS was measured from the time the patient was diagnosed, and the "events" that caused the timeline to stop included disease progression, relapse, re-treatment, or death due to any cause. They planned to measure EFS12 (how many patients did not have an event after 12 months) and EFS24 (no events after 24 months). Overall Survival (as always) involved death due to any cause, and was compared to the general population.

Overall, Follicular Lymphoma patients has a shorter Overall Survival than the general population, whether they had stage 1, 2, or 3a disease. However, when the 17% of patients who did not achieve EFS12 were taken out of the pool, there was no survival deficit. in other words, patients who went for 12 months without disease progression, relapse, re-treatment, or death had the same Overall Survival as their family, neighbors, and friends. The results were the same for the patients in the Lyon group -- those who achieved EFS12 had the same OS as the rest of the French population.

That's a pretty awesome finding, and Tom, as he said, is right to find it "very motivating."

Now, to be clear -- this study isn't guaranteeing that if things stay quiet for a year, you don't have anything to worry about. Statistically, it means your chances of a long OS are pretty good. But we are all individuals, and our diseases behave differently. Looking closer at the results, the follow-up on the patients was a median of 59 months, or 5 years, but the range was from 1 month to 131 months (about 11 years), and in that time, 43% of patients did have some kind of event, and 13% of patients died (that's from any cause, not necessarily from lymphoma). But the disease for most patients with an event after 12 months seems to have been of a type that it was treatable, and did not affect OS. (I'm counting myself in that group -- treated at 24 months, no treatment for the 80 or so months since then.)

So, yes, I think we can find some hope in this study. Follicular Lymphoma is such a strange disease for so many of us. We get a diagnosis and just wait for something bad to happen. Maybe this study can ease our minds just a little (though I think we'll always wait for that bad news).

Thanks to Tom for suggesting it (don't know how I missed it when it came out), to Kevin and Tom for having that conversation in the comments, and to all of you for reading.

Stay hopeful.

Monday, September 5, 2016

Patient Power Survey

The good folks at Patient Power are asking for help with a survey about Care Partners/Caregivers.

It's meant for Care Partners/Caregivers, so if you are a patient and you take the survey, it will ask two general questions and you'll be done.

Care Partners/Caregivers will be asked about 10 questions, and it will only take a few minutes to complete. You don't have to be from the U.S. to participate.

I link to Patient Power a lot, because they have a lot of good resources and, as their name implies, they are very patient-focused, and believe that it's good for cancer patients to know a lot about their disease. I certainly feel the same way.

They also recognize that Care Partners/Caregivers play a very important role in helping patients get better, and they need support just as much as they give support. I certainly feel the same way about that, too.

So this survey is meant to gather some information from Care Partners/Caregivers, so Patient power can figure out how to help them.

Pass the link on to a Care Partner/Caregiver today.

You can access the survey here:
http://www.surveygizmo.com/s3/3003950/Care-Partner-Survey

Tuesday, August 30, 2016

Gene Wilder

The actor Gene wilder died yesterday, from complications of Alzheimer's Disease,

He was in some of my very favorite funny movies, including The Producers and Young Frankenstein, both of which, I am happy to say, my children also love. I want to link to a favorite scene, but I'm having trouble finding just one. I think this one is as  good as any:


I just love his manic, panicked voice, which came out in a lot of his work. And that scene was followed up immediately by this one, which is just as great.

 But more than just making me laugh a lot, Gene Wilder has another place in my heart: he was the first celebrity that I featured in this blog who had lymphoma. I wrote about it just about a month after I was diagnosed. Wilder had Mantle Cell Lymphoma, went through chemo, and then had a stem cell transplant, which put him in remission.

It wasn't Follicular Lymphoma, but I didn't care. I was happy to know that someone came out alright. Even better if it was someone who made me laugh.

A lot had been made, in these last 24 hours, of Wilder's work with cancer, not just because he was a survivor, but because his wife Gilda Radner was not. She died from ovarian cancer, and Wilder helped found Gilda's Club, where cancer patients can go for support. (I wrote about that a few years ago, too.)

He was a big advocate of early detection; Radner's cancer was misdiagnosed for a long time (too common in ovarian cancer), and her cancer was far advanced by the time she did get the right diagnosis. So Wilder's legacy, at least for some people, will be about his support for cancer patients, as much as his very funny movies.

But the thing that both Gene Wilder and Gilda Radner reminded me of was to see the humor in my situation. I guess I have that outlook naturally, anyway -- I can see the absurd humor in just about anything. But the reminder is always nice. Gilda, a very funny woman (funnier than her husband, really -- he was a better comic actor, but she just damn funny), once said, "Cancer is probably the most unfunny thing in the world, but I'm a comedian, and even cancer couldn't stop me from seeing the humor in what I went through."

Words to live by.

So I'm sad to hear about Gene Wilder, but I will certainly remember the joy he brought me -- and the great things he did for us.