Thursday, November 28, 2019

Thankful

Today is Thanksgiving in the United States (I know some of you aren't from the U.S.). It's the one day we set aside in the year to be thankful.

Of course we should be thankful every day, and we probably are, but it's good to set a day aside and truly think about the good things we have in our lives, even when our days can seem overwhelmed by bad things (which happens sometimes with cancer patients).

It's close to the end of the year, too, so it's a nice time to reflect.

For my family, this is definitely a transition year. For all of my married life (almost 27 years), my wife and I have taken ourselves and our kids to either my family's house or her family's, a trip of somewhere between 2 and 6 hours. Which has been nice. Thanksgiving is often about being with family.

My dad died last year, just over a year ago, a few weeks before Thanksgiving. My mom died about five years ago. Both from different forms of cancer. So this isn't my first Thanksgiving without them. But it's the first I've had a chance to really think about it.

My wife's mom died about two years ago. (Her dad died many years ago.) So it's not our first Thanksgiving without her, either. But there's a wedding coming up in a few weeks in my wife's family, a very happy occasion, but one that will kind of change the dynamic in some ways on her side of the family, too.

So this Thanksgiving feels a little different. Lots of change.

But that doesn't mean I don't have a lot to be thankful for. In fact, it feeling a little different this year just helps remind me of those goof things.

I'm thankful for my kids. My daughter went away to college in September, and my sons are both still in school (my oldest is almost finished). Our house has been quieter. For Thanksgiving, we'll have all of them home together for the first time in a few months. It's great to have them all here. I'm so thankful that they've grown into smart, caring people who want to help others and see some change in the world.

I'm thankful for my brother and his family. We'll be spending Thanksgiving with them. After my dad died, my brother and I spent a lot of time together, going through dad's things and settling everything that needed to be settled. It wasn't very fun, but we had each other. Just like we have each other now, and I'm thankful for that.

I'm thankful for my wife's family. I now there is a long history of "in-law" jokes, and we're kind of supposed to dislike our spouse's parents and family and dread spending time with them. Not true for me, and it shouldn't be true for anyone. If you love your spouse, his or her family shaped who they are, right? So there must be some good in them. For me, there's lots of good. They've always been supportive of us and our kids. I'm thankful for them, too.

I'm thankful for my health. I'm still here, almost 12 years after I was diagnosed with Follicular Lymphoma, so there must be something to be thankful for there, right? It's been almost 10 years since I had Rituxan, and even though I've never had a completely clean scan, for the most part, I'm a healthy person. I'm not a complete picture of health -- I'm 52, so I can hurt myself gesturing to someone while I'm giving them driving directions -- but I'm healthy, and my cancer is in check. I can work full-time and go to the gym and generally do the things I want to do. So I'm thankful for that.

And mostly, I'm thankful for my wife. She's been my rock. Go back to the beginning of this blog, and you'll see that. In difficult times, she's pulled me up. And in good times, she's shared the joy with me. Our lives are a little different this year, with some new challenges, good and bad. But we face them together, and we deal. Like we've been doing for these 12 cancer-y years.

So I wish you all a Happy Thanksgiving, and if you're not celebrating, I wish you all a peaceful day, full of things that you are thankful for.



Saturday, November 23, 2019

ASH Preview: Long-Term Results of RIT

Back to ASH Previews.

The next one I found interesting is "Long-Term Outcome of Patients with Low-Grade Follicular Lymphoma Treated with Yttrium-90 Ibritumomab Tiuxetan: The Mayo Clinic Experience."

Yttrium-90 Ibritumomab Tiuxetan is better known as Zevalin, and it is a type of RadioImmunoTherapy, or RIT.

If you're new to Follicular Lymphoma, you may not eve know about RIT. It's a lot like Rituxan, in that it seeks out and attaches itself to cancerous B Cells (in fact, Zevalin attaches to CD20, the same protein that Rituxan attaches to). But RIT is different -- it has a little bit of radiation attached to it. Standard radiation that if often used on solid tumors just won't work on blood cancer. You can't hit a moving target, like a blood cell, with a beam of radiation. But RIT solves that by tracking down the cancer cells in the blood, attaching to them, and delivering that little bit of radiation right to the cell. Ideally, it cuts down on the typical side effects of radiation because it is targeted to specific cells.  

I'll admit, I'm fascinated by RIT. As a treatment, it hit its peak right about the time I was starting to understand my disease and learn more about it, and I know of a bunch of folks who have had more than 10 years of cancer-free living after RIT.

Unfortunately, it has never been used as much as it should have been used in the United States. Because it involves radiation, it requires extensive, specialized training in order to be administered. When it was first approved, there were also some related issues regarding how doctors were paid for it. Despite how effective it has been, the administrative difficulties have kept it from being used as much as it probably should be used.

Still, there is lots of research being done on RIT, including Zevalin (search this blog and you'll see few stories from 2018 on Zevalin), and a new RIT, Betalutin, was given Fast rack designation by the FDA last year. I'm hoping that if it does get approval in the U.S., they'll find a way to get it into patients.

As for this particular ASH presentation, the researchers looked at the long-term effectiveness of Zevalin in patients at one cancer center (The Mayo Clinic). Patients had low grade FL (grade 1 or 2). Basically, they wanted to see how Zevalin affected Overall Survival and how long patients went before needing another treatment.

Looking back at medical records, they found 137 FL patients had Zevalin between 2003 and 2018.

Median follow up was 10.2 years; median age of patients was 60, and 69% of patients were still alive.

For patients who had Zevalin as their first treatment, there was a 100% Overall Response Rate, and a 93% Complete Response Rate. For patients who had Zevalin as a second or later treatment, the OR was 93%, and the CR was 73%.

Of the 108 patients who a Complete Response, 45% of them still had that response a median of 7 years later. Only 43% of the first-line patients relapsed in that time, while 71% of the second-line patients did.

For the whole group, the median Progression Free Survival (how long it took for the disease to get worse or comeback) was 2.5 years, and the median Time To Next Teatment was 3.6 years. The PFS and TTNT numbers were better for the first-line group than the second line group.

Now the Big Number: media Overall Survival for the whole group was 18 years.  It was also 18 years for the second-line group, and a median hadn't been reached yet for the first-line group (since the median is the exact midpoint of the group, that means not enough people had died yet to measure the median -- a very excellent thing).

None of this very surprising to me, given the excellent long-term results in the people I now who had it years ago.

The researchers conclude that the numbers for Zevalin after almost 20 years are even better than they were when they first started measuring all of this. They recommend using Zevalin in combination with newer treatments as a way of extending their effectiveness.

That certainly seems like good advice. In fact, a recent study looked at patients who had Bendamustine + Rituxan, followed by Zevalin. The B + R had a 97% Overall Response, with a 56% Complete Response. When they followed it with Zevalin, there was again a 97% OR, but the CR went up to 89%.

It's good stuff, that RIT.

It would sure be nice if we could find a way to get it to more people who could be helped by it.


Tuesday, November 19, 2019

The Follicular Lymphoma Foundation

Good news for Follicular Lymphoma patients: yesterday was the launch of the Follicular Lymphoma Foundation.

The FLF was begun by Nicola Mendelsohn, who is a Facebook's Vice President for Europe, the Middle East, and Africa. She was diagnosed with FL in 2016, watched and waited for a year, and then did chemo. Things look stable now.

Her story is very familiar to a lot of us. She'd never heard of Follicular Lymphoma. She had no symptoms. She was married with 4 kids. She went back to work after she found out. She found a support group on Facebook (of course) and learned from others.

And, using her huge influence, she started a foundation to raise money for research. It's the first ever foundation for just Follicular Lymphoma -- no other lymphomas or other cancers involved.

If you're tapped into the online FL community (I certainly am), you know that the launch of the FLF was a big deal yesterday. Mendelsohn was interviewed on TV, and a number of magazines published stories about her.

Though the foundation is based in London, its major initiative will be to work with international organizations to find a cure for FL. Certainly, no matter where the research is taking place, it will help all of us.

This is a good thing. Head over the the FLF website and take a look around.

Saturday, November 16, 2019

ASH Preview: R-Squared


Next up in previewing some of the research that I find interesting at ASH: some stuff about R-Squared.

R-Squared, if you're new to this, is the combination of Revlimid (also known as Lenalidomide) and Rituxan. A few months ago, the FDA approved R-Squared for some patients with previously-treated Follicular Lymphoma. And just yesterday, the Committee for Medicinal Products for Human Use recommended that the European Commission approve R-Squared for the same group of patients. That decision should come in about two months.

R-Squared is a big deal because it's the first combination approved for FL that does not involve some kind of traditional chemotherapy. Chemo can be very effective on FL, but with some side effects that can also damage a lot of healthy cells in the process. R-Squared is more targeted -- it spares healthy cells more than chemo does, but it also has a different bunch of side effects, sometimes also severe.

It's one of those treatments that oncologists get very excited about. It shows that there is promise for Follicular Lymphoma treatments that are not chemo.

There's still a lot of R-Squared research going on, particularly for patients with FL who have not yet received treatment. A fairly safe, effective, non-chemo treatment for first treatment would be another great option.

Two of the ASH presentations that I found interesting looked at just this issue.

The first is called "A Phase II Study of Lenalidomide Plus Rituximab in Patients with Newly Diagnosed Follicular Lymphoma: An Interim Analysis." This presentation is an "interim analysis" -- the phase II study isn't finished yet, but they're giving us some results. The researchers are from China, as are the patients. So far there have been 86 patients in the trial. Interestingly, the median age of the patients is 48, and the range of ages is 22 to 73. It's a fairly young group, compared to the typical age for someone diagnosed with FL, which is about 65. The results have been good so far, with 64 patients being evaluated. There is an Overall Response Rate of 90% (58 of 64), and a Complete Response rate of 81% (52 of 64). The side effects are manageable, and seem in line with the side effects in the previously-treated FL group.

A second interesting presentation on FL and R-Squared is "Predictive Factors of Response and Survival of Lenalidomide and Rituximab As Initial Treatment of Follicular Lymphoma." This study looked back at 98 FL patients who had been given R-Squared as a first treatment. Response rates were similarly great -- 98% Overall Response Rate, and a 90% Complete Response Rate, after 6 months. After 88 months (a little more than 7 years), 31 patients progressed or died. Only 3 patients had transformed disease, and 2 patients died (one from disease progressing, and one fro unrelated health issues).

The news looks good for R-Squared as a possible first treatment. There is a growing body of evidence (including these two reports) that shows good effectiveness with manageable side effects.

The weeks following a big conference like ASH often have announcements of FDA applications. The research gets presented at the conference, and pretty soon, the process starts for getting the treatment its official approval.

I don't now if that's the plan right now (the first one I looked at above is a study from China, and the second looks back at patients, rather than showing trial results), but my guess is the approval will be sought by someone soon.


 

Tuesday, November 12, 2019

ASH Preview: Doctor-Patient Communication for FL

The ASH Abstracts are here!

ASH is the American Society of Hematology, the country's largest organization for specialists in blood cancer and other blood diseases. Every year in early December, they hold their annual conference. And a few weeks before, they release the abstracts for the conference -- the summaries of the presentations that researchers will make.

Summaries can't tell you everything, but they do give the highlights. So every year at this time, I look through the abstracts for Follicular Lymphoma and right about the ones that look interesting to me. So maybe they aren't the most "important" (though if there is some major news, I'll write about that).

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

So here's the first one: "A Cross-Sectional Study of Unmet Needs of Lymphoma Patients in Patient-Doctor Communication: Follicular Lymphoma (FL) and Diffuse Large B-Cell Lymphoma (DLBCL)."

This presentation looks at data from the Lymphoma Coalition's 2018 Global Patient Survey, and it compares responses from Follicular Lymphoma patients and DLBCL patients about their needs for communication with their doctors. It seems to me that the communication, overall, is not good.

Overall, the survey looked at responses from 6631 lymphoma patients in over 70 countries. 937 of them have Follicular Lymphoma, and those were the responses that interested me most, of course.

As for ages 17% of FL patients taking the survey were under 40 (I was diagnosed at 40), and 33% were over 60. My math skills tell me that 50% were in their 40's and 50's. (That's not when they were diagnosed, just how old they were when they took the survey.)

As for communication,  65% of patients would have liked more information and support when they were diagnosed, but only 39% said their doctor encouraged them to have more discussion and 23% said they were referred to other places for support. 

About 70% of FL patients reported physical issues to their doctors, but only 42% reported emotional issues. Only 40% felt helped by their doctors for physical issues, and only 31% felt helped with their emotional issues.


62% of patients felt helped by doctors for treatment side effects, but only 33% felt helped for Fear of Relapse.

Before moving on, I think it's important to point out that this survey might not represent all FL patients. Since it was put out by the global Lymphoma Coalition, it seems to me that a particular type of FL patient was more likely to take it -- one that's more of an advocate, and maybe (as a result) one that is more critical. (I'm thinking of myself.) That might have made the numbers lower.

That said, the problems pointed out by the survey are troubling, especially with the way patients and doctors talk about emotional needs.

Troubling, but not surprising.

I've been saying for years that Follicular Lymphoma is an emotional disease as well as a physical disease -- maybe more so than for other cancers, because we often have no physical symptoms, and are waiting around for things to happen.

I wonder if that's part of the issue with FL patients not feeling like their emotional needs are taken care of. An experienced doctor might see the FL diagnosis and think "Slow-growing, we can watch and wait, I'm not too concerned yet." But a patient thinks "CANCER!" A doctor might see no physical symptoms and that means nothing to worry about. But a patient, as many of us know, can't help but worry.

I don't know if a survey like this will mean that doctors start to pay more attention to these things (my guess is that it won't). So that means it's on us as patients to ask for more. We need to insist that we get what we need, even if it isn't offered to us.

That's not easy when we're marinating in the emotions that come with a cancer diagnosis. But it's exactly the reason we need to.


Thursday, November 7, 2019

Options for Newly-Diagnosed Follicular Lymphoma

Targeted Oncology has a nice piece on a presentation by Dr. John Leonard at the CFS (Chemotherapy Foundation Symposium) in New York this week. He spoke about the options for newly diagnosed Follicular Lymphoma patients, and the recent research that helps us understand them.

Basically, newly-diagnosed FL patients fall into one of three groups:
Localized Disease
Advanced Stage Disease with Low Tumor Burden
Advanced Disease with Symptoms

Each group has different choices for treatment.

Limited Stage or Localized disease is usually stage 1 or 2. About 70% of patients will not need treatment for 10 or 15 years, so watch-and-wait or radiation is appropriate, rather than chemo. Recent research shows that adding chemo or chemo + maintenance to patients in this group increased the time between treatments, compared to patients getting radiation, but all three approaches had the same Overall Survival.

For patients with advanced stage (3 or 4) FL, but with no symptoms, there are other options. (This is the group I was in when I was diagnosed.) Options for this group also include watching-and-waiting, but, according to Dr. Leonard, Rituxan is also an option, and can last in longer times between treatments.  Dr. Leonard cites research that shows that just 4 doses of Rituxan gave a median Progression Free Survival of just under 2 years, with 15% of the group progression free at 7 years. (I watched and waited for 2 full years, and then had straight Rituxan -- I haven't needed treatment in almost 10 years.)

The there's the third group -- they are diagnosed with advanced disease, with symptoms like large tumors or aggressive disease. The standard first treatment is either Bendamustine + Rituxan or R-CHOP. The B-R tends to have fewer side effects with the same effectiveness. Other options include Obinutuzumab instead of Rituxan, or R-Squared (Rituxan + Revlimid). Again, Dr. Leonard cites recent research that shows how well these treatments work for this group.

Dr. Leonard also pointed out that there are a whole lot of questions that still need to be answered (like whether or not we'll ever have something that's more effective than watching and waiting but with few side effects so it doesn't affect Quality of Life.

There are more choices than just these, of course -- and plenty of clinical trials for patients in all three groups. As always when I read about treatments, I feel good knowing we have some decent options right now, and there are more coming in the future.




Sunday, November 3, 2019

How One FL Patient Was Treated

Targeted Oncology has another video series on Follicular Lymphoma. It features Dr. Jonathan Friedberg from the Wilmont Cancer Institute in Rochester, NY.

As with many of these video series, I find this one interesting because it provides some very up-to-date information about FL and one expert's opinions on that information. (That doesn't mean it's new information, which is OK, too. It's nice to now the stuff I already know is up to date.)

The series features Dr. Friedberg talking about newer treatments in Follicular Lymphoma, but what I find most interesting is the video called "59 Year Old With Relapsed Follicuar Lymphoma." In the video, Dr. Friedberg gives a case study of an FL patient.

Now, I've watched enough Call the Midwife by now that I could almost certainly deliver a baby by myself. And I've read enough about FL that could guess an expert's recommended treatment.

So I watched the video and made my guess.

Here's what we know (copied from the Targeted Oncology website):

++++++++++++++++++++++++++

Case: A 59-Year-Old Man With Symptomatic Follicular Lymphoma
A 59-year-old man presented to his physician with a 10-lb weight loss and chronic night sweats for the past couple of months. He complained of intermittent fatigue but is able to maintain his current exercise regimen.

H & P
  • PE: enlarged bilateral axillary lymph nodes; enlarged spleen, palpable
  • CBC: WBC, 12 X 104 /L; platelets,103 X 109 /L; Hgb, 9.2 g/dL
  • LDH: 400 U/L
Biopsy
  • Excisional biopsy showed grade 2 follicular lymphoma; CD20+, CD10+
  • Bone marrow biopsy; 60% involved
Imaging
  • PET/CT showed widespread lymphadenopathy and a large splenic mass measuring 10 cm
  • Diagnosis: Stage IV follicular lymphoma
++++++++++++++++++++++++++

Any other amateur oncologists want to give this a shot?

No information on his previous treatment, so I went with Bendamustine + Rituxan.

I was wrong, as you will see if you watch the video. I won't tell you what the actual treatment was.

The lesson here? I'm not a doctor. I make that clear on the blog, and I always remind anyone who emails or tweets me for advice. The best thing you can do when you have concerns is to talk to yur doctor.

I could still deliver a baby, though.