Lessons from a Survivor

I came across this video from the Lymphoma Association (UK)'s Great Purple Collection, which raises funds for Lymphoma support.

(The Lymphoma Association also has a fundraiser called The Great British Tea Break. In the U.S., if we want to raise money for cancer, they usually make us walk, sometimes all night, sometimes for the length of a marathon, sometimes by running, biking, or swimming (or all three) instead of walking. I get it -- we're encouraging people to be healthy. But I really like the idea of raising money by drinking tea and eating cake. I am totally on board with that kind of fundraiser.)

The Great Purple Collection includes a series of videos of cancer patients discussing their experience, and this video of a man named Bernard really struck me.


Bernard was diagnosed with Follicular Lymphoma when he was only 20 years (which is very young for that diagnosis, as most of us know) in 1968, and because he was "under the age of consent," he wasn't really told anything about his disease. (And since it was 1968, there wasn't nearly as much to tell as there would be these days.) He was told he had Non-Hidgkin's Disease (it seems like they didn't even use the word "lymphoma").

A couple of lessons for me from Bernard's story:

First, we do know so much more now than we knew in 1968. We know more now than we knew in 2008, when I was diagnosed. It's amazing how far we have some. (And I keep saying "we" because, even though I'm in no way part of the research teams that are doing this, I'm one of their biggest fans, so I deserve as much credit as a baseball or football fan does for their team.) Even our attitudes seem to have changed in the almost 50 years since Bernard was diagnosed -- we're much more open about talking about cancer. That can only be a good thing.

Second, Bernard had had Follicular Lymphoma for almost 50 years! We've had some discussion in the comments in the last few weeks about Overall Survival statistics, and what they mean, and which to trust. As I've said before, I've learned to ignore the statistics that make me sad, and focus on the ones that make me happy. And Bernard's story makes me happy.

It makes me think of something that someone said in the support group a few years ago. Her doctor told her that with the advances happening in treatments for FL, if they could keep a patient alive for 5 years, they could keep him alive for 50. I think of that a lot.

Will we all be alive 50 years from now? Probably not. Can we apply Bernard's story to ourselves? No, we're all different.

But can Bernard give us some hope? Absolutely. There are 50 year survivors out there. A Follicular Lymphoma diagnosis is in no way a death sentence, and treatments will only get better from here.

I'm jealous of Bernard's Survival Statistic, and of his beautiful flowers, too. I'd love to put a bunch of them in a vase and serve you all a cup of tea.

And you better believe there will be cake.

Lymphoma Canada Survey on Obinituzumab/Gazyva

If you have been treated with Obinituzumab/Gazyva, Lymphoma Canada needs your help!

Lymphoma Canada is a support and advocacy group, based in Canada, that helps out Lymphoma patients. They are currently helping to gather information about Obinituzumab/Gazyva for the pan-Canadian Oncology Drug Review (pCODR), a government agency that makes recommendations for funding to the health ministries of the provinces.

Part of the information that the pCODR needs has to do with patient experiences with a treatment.

That's where Lymphoma Canada comes in -- they have developed a survey for Follicular Lymphoma patients whop have been treated with Obinituzumab/Gazyva.

You do NOT need to be Canadian, or live in Canada, to complete the survey.

I've written about how important it is to be part of clinical trials to help make new treatments available to patients. Think of this as another way of helping -- the information you provide might help make this treatment available to Follicular Lymphoma patients.

I'm not sharing this because two of my grandparents were from Nova Scotia, and Montreal is one of my favorite cities in the world. It's because it's really important that we help each other out any way we can.

The message from Lymphoma Canada is below. Thanks for your help.

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Follicular Lymphoma Patient Survey

If you have follicular lymphoma and have been treated with obinituzumab (Gazyva) you can help by completing our survey.

Lymphoma Canada is preparing a submission for the pan­Canadian Oncology Drug Review (pCODR) for:

Obinituzumab in combination with chemotherapy, followed by obinutuzumab maintenance, for the treatment of patients with follicular lymphoma who relapsed after, or are refractory to, a rituximab containing regimen.

You can help by completing our survey, which will provide us with the patient input required for the submission. pCODR uses this information to help them make recommendations to the provinces and territories regarding funding for new cancer drugs.

You do not need to live in Canada to complete this survey.

BY COMPLETING THIS SURVEY, YOU ARE PART OF THE PROCESS THAT MAY HELP PATIENTS GAIN ACCESS TO THIS TREATMENT IN CANADA.

The survey will be open until midnight Pacific Time on Friday, November 4th and should only take 10 minutes of your time.

You may access the survey at the following link:

https://www.surveymonkey.com/r/FLPatientsGazyva2016

Expanding Treatment Options

Things have been very busy lately. I haven't had much time to read and write for the last few weeks. Work has been busy (and I'm always grateful to have a job I like, and the good health to be able to keep at it), and my kids' lives have been even busier. We saw my oldest son this weekend; he's been away at school, and we went down to see him, which was great. But now I'm way behind on everything, including Lympho Bob (but worth it to see my son).

So I have some reading for you to do, without much commentary from me. It's an article called "Treatment Options for B Cell Lymphomas Continue to Expand," from the most recent Cure magazine. Cure is often found in oncologists' offices (in the U.S., anyway), so chances are good that some of you have seen it.

The article discusses some of the newer treatments for B Cell Lymphomas, including Follicular Lymphoma) and makes the point that there are lots out there and lots more being developed. It's overall a very hopeful article.

I could object to a few of the details. I personally wouldn't call Follicular Lymphoma "an uncommon blood cancer," since it's the second most common type of NHL. I'm also not crazy about referring to treatment options as "alphabet soup," which seems to encourage people to just be confused about things and not do a little work to learn about the disease.

But those are small complaints, and mostly the article is very good at a few important things:

• It is, as I said, very hopeful in painting a picture of the future of treatments for lymphoma. We have options, and more are on the way. We shouldn't ever lose sight of that.
• It is pretty honest about the downsides of treatment. The patient that gets focused on in the article has Follicular Lymphoma, and the side effects she deals with are not pleasant. I know I often focus on positive things about lymphoma research, and ignore things like side effects. It's good to be reminded that treatments all have risks, and many of us know from experience.
• The article makes a big point of the importance of clinical trials. Great treatments won't get to us without approval, and approval won't happen if patients don't participate in trials. For some patients, a trial might be the best option -- even better than treatments that were already approved. (You can find a clinical trial finder at Lymphomation, along with advice about whether or not a trial is right for you.)

So read the article. I'm going to take a nap and then get back to work.

More soon (I hope).

Follicular Lymphoma: Where We Are Now

Many thanks to the commentor who (just this morning) provided a link to a session on Follicular Lymphoma at the European Society for Medical Oncology meeting last week. (The commentor is listed as "Unknown," which is kind of cool -- we have lots of mysteries with FL, but The Unknown Commentor is kind of a fun mystery.)

ESMO 2016 took place in Copenhagen, and has tries to "bridges the gap between researchers, clinicians and patients and unites all stakeholders focused on finding the most effective cancer treatment solutions available today."

The link to the session is from LymphomaHub, and includes photos of slides from the presentation, as well as commentary. The presenter was Dr. Michele Ghielmini from the Oncology Institute of Southern Switzerland. The presentation is called “Follicular Lymphoma (FL): Novel Developments Beyond Chemotherapy.” Since it took place last week, it's probably about as up-to-date a discussion of Follicular Lymphoma as we'll find.

The link to LymphomaHub is pretty easy to read, and you can read the whole thing on your own, but I'm going to list a few things that I think are highlights.

• Dr. Ghielmini is a big advocate of Rituxan. Chemotherapy does not provide much benefit as a first treatment for FL, especially when long-term side effects are taken into consideration. Chemo is best reserved for later treatments. That seems pretty well in line with what a lot of people are saying, though there are still plenty of oncologists who recommend R-CHOP or R-Bendamustine as a first treatment.
• The current median Overall Survival rate for Follicular Lymphoma patients is about 15 years. He gets this from some recent published data. He also gives some other OS figures: FL patients younger than 40 have a median OS of about 24 years. There are lots of factors that determine whether a patient is on the plus or minus side of that 24 years, but it's a very encouraging number for those of us who were diagnosed at a young age.
• Rituxan Maintenance is still controversial. There's lots of evidence that says it's a good thing, and lots that says it's not necessary. Tough decision for those who have to make it. Like many decisions with FL, I think it will come down to Quality of Life -- do you have the time and money to do it? Will doing it give you peace of mind?
• R-Squared (Rituxan + Revlimid/Lenalidomide) seems to be as effective as Rituxan + Chemo, though there needs to be more long-term follow-up to see if the great response rates mean a long Progression-Free Survival (it helps lots of people at first, but will it keep helping them for a long time?).
• "Small Molecules" or pathway treatments such as Idelalisib, Ibrutinib and Venetoclax. Dr. Ghielmini showed the most recent results for Idelalisib and Ibrutinib. We've known about these results for a while -- nothing new presented here. A little less well-known, though, are results from early trials for Venetoclax (also known as ABT-199). It's a BCL-2 inhibitor, and the latest data is from a very small phase 1 clinical trial for Follicular Lymphoma. (Maybe we'll see updated results soon?)
• There are lots of trials that are investigating combinations of various treatments. There are lots of folks who think this is the best way to go. Single agents might work well, but cancer is sneaky enough to find ways around those successes. Blocking more than one path or attacking in more than one way seems like the best way to go.
• Finally, the LymphoHub piece concludes with: "In future, we need to develop combinations based on the oncogenic alterations of each individual tumor." This is also probably true. As much as we can find general approaches that seem to work for lots of people, in the end, we'll probably need to find treatments that are based on biomarkers for each individual patient to give the best chance of success.

So, overall, this was a nice article for summing up much of what we know about Follicular Lymphoma and its treatment, as of last week, anyway.

But as Dr. C, the lymphoma specialist I saw a week after I was diagnosed, told me almost 9 years ago, "Anything you see online is already out of date." As up-to-date as Dr. Ghielmini's presentation is, it doesn't include everything (no mention of CAR-T, for example). And it doesn't include results from trials that we'll probably see in 6 weeks or so when ASH takes place.

And that's not a criticism of Dr. Ghielmini. It just means that we all have lots more to be excited about as Follicular Lymphoma patients. As great as things look right now, especially compared to 9 years ago when I was diagnosed, there's still lots more great stuff to come.

(Thanks again, Unknown Commentor, wherever you are......)

Follicular Lymphoma for Sale

So I was doing some research for a post, and I remembered that there was a web site that I had looked at a few days ago, but I didn't bookmark it, and I couldn't remember what the name of the site was. So I did a search for "Follicular Lymphoma," and I was scrolling through the results, and on page 2, I saw this:

 

"Lymphoma Follicular for Sale"? Well, this was something I obviously needed to explore. I mean, if someone is out there selling Lymphoma, then there must be buyers out there. And if someone is willing to buy, then I would be happy to sell them my Follicular Lymphoma. Really cheap. I'll even pay the sales tax. It's really good lymphoma, too -- I've hardly used it for the last 6 years or so.

(The search engine I was using, by the way, was not Google. Because Google wouldn't so something like advertise Follicular Lymphoma, or Lymphoma Follicular, as being for sale. That would be weird, and they wouldn't so that, and Blogger, which hosts this blog, is owned by Google, and wouldn't do anything to upset my blogging Overlords.)

So anyway, I get this weird result in my search results list, and I really have no choice but to click on it, because how could I resist?

My click brought me a shopping site, and the first result was this book:

But here's the kind of strange thing: it was being sold by WalMart. I know you can get pretty much anything at WalMart, but this is a study guide for medical students who are preparing for their board exams. I've never read this book, so this isn't an endorsement (though WalMart did encourage me to be the first to review it). But it's good to know that WalMart is there if I have any medical-boards-level questions about cancer.

The rest of the page, and the next two page, were lists of more books about Follicular Lymphoma, other kinds of lymphoma, and cancer in general. Some looked like the same kinds of study guides as the first one. Others looked like self-published stories from cancer patients and caregivers (all my love to you folks -- I hope someone reads your stories and they are helped by you).

But then it got really weird, because the next page was stuff like shoes, a waffle iron, a vaccuum cleaner -- things that didn't seem to have any connection to Follicular Lymphoma (or Lymphoma Follicular). I clicked on some of them to see if there was something in the ads that was related to FL, and there was nothing that I could see. I was expecting SOME connection -- proceeds from the sale of the waffle iron go to Lymphomation.org, or something like that? But, no. It was just a waffle iron.

But this did get me thinking about how little I see about Lymphoma in the world when I'm not looking for it. I'm probably especially sensitive to this during this particular month, when my bread has a pink wrapper and local businesses are pushing their "Cookies for Boobies" promotions and the like.

Lymphoma Awareness Month was in September, and I worry that maybe we're not doing as good a job as we could be in making people aware. There's lots of good stuff happening in the Lymphoma World -- new treatments, new approaches, new ideas. And "awareness" is important on its own, but more important is doing things like pushing for more funding for Lymphoma research, or considering a clinical trial for treatment, or writing to someone who can help save RadioImmuno Therapy.

Some folks celebrated a new year a few days ago, but maybe we can all make a new year's resolution today to be advocates, not just for ourselves, but for all lymphoma patients. We're in this together.

 

More CAR-T Awesomeness

Lots of people are getting excited about the things that CAR-T treatments can do. Just when you thought it couldn't get more awesome, a new study in Cell gives us reason more reason to be excited about CAR-T for Follicular Lymphoma.

(But before I go on, I want to thank a reader named Ben for sharing his experiences with CAR-T in the comments section of a post from a few weeks ago. I didn't get a chance to respond to the comment, which is a great mix of hope for the future of this treatment, and caution about some of the side effects. Please do read Ben's comment when you get a chance.)

The article is called "Loss of the HVEM Tumor Suppressor in Lymphoma and Restoration by Modified CAR-T Cells." Here's what it says:

So far, CAR-T cells are used as ways to help the body's immune system recognize and attack cancer cells that would otherwise get past those defenses. T cells, which usually attack invaders, are removed from the body and changed so they recognize the cancer cells as invaders. It's been a pretty effective treatment so far (again, I suggest you read Ben's comment).

But CAR-T cells can do other things, too. Because they focus in on cancer cells, they can also be used to deliver things to those cells. It's kind of like RIT, which identifies cancer cells and delivers a tiny dose of radiation. CAR-T can deliver things that don't just kill the cell, but repair it instead.

The researchers know that many cases of Follicular Lymphoma cases involve a gene called HVEM. Whn HVEM is mutated (as, of course, it is with Follicular Lymphoma), it cannot interact with a protein called BTLA. When that happens, bad things happen -- cancer cells go crazy.

(This is another of those pathway things that we're learning more about. When everything is working OK, calls behave themselves. Mess with the pathway, and all hell breaks loose. It's like a fence that keeps pigs on a path between two pens. If the fence breaks, that path gets messed up, and the next thing you know, there are pigs all over town.)

So here's where CAR-T comes in. The researchers figured out that the HVEM gene can be repaired if the HVEM protein can be delivered to the cell.  The CAR-T cells can be told to find cells that have the CD19 protein on the surface, which is a protein Follicular Lymphoma cells have. When the CAR-T cells find it, they can deliver the HVEM protein to that cell, and the cell can be repaired. No more HVEM mutation, no more messed up pathway, no more cancer. The pigs stay in the pen.

But here's what makes CAR-T so amazing.

In addition to changing T cells in CAR-T cells, researchers were also able to program the cells to keep producing the HVEM protein. T cells are meant to find an invader and then multiply and find any other similar invaders. CAR-T cells are no different, and neither are these special CAR-T cells. They will keep producing that HVEM protein, finding other cancer cells, and getting the protein to them, too. One article calls them "mini-pharmacies" -- they keep traveling around and producing the treatment that the cancer cells need. Very cool. Because the CAR-T cells are delivering a protein that only mutated cells will need, the thinking is that healthy cells will be spared, and there will be fewer side effects.

As exciting as this is, right now, it has only been tried on animal models. No humans yet. But the researchers think that their work justifies carrying on with this approach to see how well it really works.

There's definitely reason for hope with CAR-T. As relatively new as it is, we're already seeing variations of it, like this one, that seem to improve on it.

Lots to look forward to.

Radiation + Chemo for Stage 1 or 2 FL

I've seen a bunch of news stories about this (like this one), so I thought it was worth discussing: last week, a presentation at the American Society for Radiation Oncology showed that adding chemo to radiation treatments can greatly improve Progression Free Survival for Follicular Lymphoma patients with stage 1 or stage 2 disease.

(I looked for the abstract in the ASTRO program online, but I just couldn't find it, so I'm going by the news stories that I've been reading.)

The study focuses on stage 1 and 2 Follicular Lymphoma. I'm sure most of you know which stage you were diagnosed at, and it was probably 3 or 4. Because FL patients usually don't have any symptoms, it doesn't show up until it has reached stage 3 or 4. Stage 1 or 2 means the disease is concentrated in one or two areas of the body, above the diaphragm. (See Lymphomation.org's explanation here.)

Because the disease is focused on only one or two areas, it can often be treated with radiation, the way some solid cancers can be treated. In this study, the researchers used Involved-Field Radiation Therapy (IFRT), which means radiation is used only on the immediate area where the cancer is found. (Extended-Field Radiation Therapy is also used on some cancers, but it covers a larger area of the body and can lead to more side effects, short- and long-term). Radiation is often used on stage 1 and 2 FL, because the cancer is in a small space. Some patients are even cured with radiation alone (one article I read says it might be 50% of them).

But that's not true for everyone who is stage 1 or 2. And for those folks, the study says that following up with chemo (specifically, CVP or R-CVP) will increase Progression-Free Survival, the time it takes until the cancer comes back or gets worse again. Of the patients in the study, the 10 year PFS for those in the radiation + chemo group was 59%. The radiation only, with no chemo, was 41%. Pretty good.

I think this is great for patients who are stage 1 or 2, and deserving of the attention it has been getting, but I have some thoughts:

• First, this effects a pretty small number of FL patients. One of the articles says only about 2% of FL patients are diagnosed at stage 1 or 2; I've seen it as high as 15%. but either way, it's a small number of us. This is great news for those patients, but it isn't going to mean much for the great majority of us, since IFRT isn't appropriate for us.
• Second, while the PFS saw a lot of improvement, there was no difference between the two groups in Overall Survival. It may take longer until the next treatment, but it won't affect how long the patient lives. So that's a mixed blessing. There are a lot of treatments in the same situation -- it's really hard to increase Overall Survival for FL patients.
• Third, this was a really long-term study, so it used CVP (which is CHOP, but without the component that damages your heart). I see fewer and fewer new studies involving CVP, so I'm not sure how useful it's going to be compared to newer treatments that don't involve traditional chemo, but instead use those cool new targeted pathway treatments.

So, in some important ways, the study is limited. However, there are definitely some good things about the study, too:

• This is a little bit of a stretch, but this might reinforce the idea that radiation is a useful treatment for FL patients, and maybe RadioImmunoTherapy is something we need to keep pushing for. IFRT and RIT are different in the details, but they share a similar approach -- zapping those darn cancer cells until they glow like Fenway Park during a night game. If you haven't done your part to help save RIT, then get to it.
• The real value to this, I think, is that it was such a long-term study. They followed these patients for a median of 10 years (half of them longer than that). That's important. Our disease is a long-term disease, and it helps us to see how things work out long-term. there's a push now to approve treatments after a short term, maybe as short as 1 or 2 years. But studies that follow patients for a long time help us see how the treatments affected not only our PFS and OS, but our lifetsyles as well. So if this is an example of a long-term study that shows some good, maybe we'll see more of them.

For any of you that have stage 1 or 2 Follicular Lymphoma, I hope you see some good stuff here.