A Little Lymphoma Humor

This meme has been around the internet for a little while, but I came across it last night, and I thought I'd share:

 

For those of you who need to translate, this is what the two people talking in the meme are saying:

"Hello, we have discovered two types of Lymphomas and would like to register them." 

"OK, tell me your names please."

"Dr. Hodgkins."

"OK, so Hodgkin's Lymphoma. The second Doctor's name, please."

"Dr. Ottovordemgentshenfelde."

"OK, Non-Hodgkin's Lymphoma. Done."

 ***********************

I think it's an amusing meme because I've always found it strange that we have a disease that isn't named for what it is, but instead for what it isn't. And it's weirder because there are many, many more people with NHL than with Hodgkin's. But Hodgkin's was named first, so there's not much we can do (except maybe challenge them to a Lymphoma Olympics and use our superior numbers to beat them).

And, as far as I can tell, there is no lymphoma researcher named Dr.
Ottovordemgentshenfelde. But that is the longest name is Germany, apparently,and there is a Dr.
Ottovordemgentshenfelde who has a PhD and teaches at the London School of Economics and Politic Science, and studies digital communication. Very interesting research if that's your thing.

Hope this gave you a small smile today. I'm a big believer in the benefits of humor, something we need more than ever.

Shorter Obinutuzumab Infusions for FL (Europe)

Good news for those of you in Europe -- The EMA (European Medicines Agency, the equivalent of the FDA in the US) has approved a shorter infusion time for Obinutuzumab. Now, instead of taking 3 to 4 hours for an infusion, it should be done in about 90 minutes.

The change comes from the results of the GAZELLE study, which involves patients with Follicular Lymphoma, some who have not had a treatment yet. The purpose of the study was to find out if the Obinutuzumab infusion could be shortened, and was given as part of a treatment with chemotherapy. 

Patients were given the first round as usual, with the longer time. Those patients who did not have a serious reaction were then given the shorter version for the other rounds of treatment. About 62% of the patients in the study had an infusion-related reaction, but only about 6% has a grade 3 (serious) reaction, and none had a grade 4 or 5 (most serious). 

The faster infusion was based on infusion-related side effects, not side effects that came later (and 99% of patients in the study had some kind of side effect -- it's to be expected).

Obinutuzumab is given as an alternative to Rituxan. It's very similar -- a monoclonal antibody that targets the protein CD20. It is made a little bit differently, using human cells rather the mouse cells used in Rituxan. It has been approved in FL in combination with Bendamustine, followed by Obinutuzumab maintenance. It is slightly more effective that Rituxan, with slightly worse side effects.

I've never had Obinutuzumab, but I know what it's like to sit in a chair in the treatment room for 6 hours to get Rituxan. I had an allergic reaction to my first dose (which is fairly common), so the rest of my doses had to be slowed down. It would have been pretty great to have it all cut down to 90 minutes.

And, of course, that would have other benefits, too, besides the important Quality of Life changes that come with not having to spend all day in a chair. Shorter infusion times should mean a lower cost, which is good for everyone. It also could mean more safety in a more general way -- with a pandemic still going on, it would be great for someone who is immunocompromised to be able to spend less time in a hospital or doctor's office, or anywhere else with lots of people around. And less time in the chair means more space open for other patients.

The approval covers Europe, and starts immediately. No word on when the maker of Obinutuzumab plans to apply for FDA approval as well. But it's good news for a lot of you from  Europe.

Lymphoma Research Foundation Events

I have advertised a few events from the Lymphoma Research Foundation over the last year or so. I think the LRF does a good job of getting information to patients in ways they we can understand.

The LRF has two events coming up that might be of interest to you all.

The first is LRF's North American Educational Forum on Lymphoma. It's coming up very soon -- October 15th to the 17th. You can register for it here.

The forum has many presentations, including Lymphoma Overview for Newly Diagnosed Patients and Caregivers (Jacob Soumerai, MD, Massachusetts General Hospital), Lymphoma Survivorship (Priyanka Pophali, MD, University of Wisconsin) and Relapsed/Refractory – How to Cope When your Lymphoma Returns? (Jennifer Amengual, MD, Columbia University Medical Center). There are others focused on CAR-T, nutrition, and Covid-19. And then there are special sessions on individual Lymphoma types, including Follicular Lymphoma. 

Registration is required, though the event is free. If you're interested, do it soon.

The second LRF event is one of their "Ask the Doctor" events. The North American Forum is probably going to be very large with hundreds of patients and caregivers. "Ask the Doctor" is usually a little smaller and more intimate. The idea is that patients can ask questions of the doctor, and with fewer of them, there's a better chance of getting one answered.

The Ask the Doctor event that is coming up next is with Dr. Caron Jacobson of Dane Farber, on October 26. But there are a few others during the fall, too, including one conducted in Spanish on November 2, if that is your preferred language. The sign-up page for all of the Ask the Doctor events is here.

Knowledge is good. It's nice to have the opportunity to hear form experts, and even better to have the chance to ask questions and get answers.

Trial for a New CAR-T Has Been Paused

The phase 1 clinical trial for a new CAR-T treatment has been paused (not cancelled) while the FDA tries to figure out why one patient is having some problems.

Quick review -- CAR-T involves removing a patient's T cells (a type of immune cell), changing them in a laboratory so they can recognize cancer cells as something to be eliminated, and then putting them back into the patient. Ideally, they do their job of killing off the cancer cells, and the stay in the body (like any other T cell) until they recognize any return of the cancer cells, and take care of them.

This clinical trial involves a different kind of CAR-T, an "off the shelf" version called ALLO-501A. In other words, instead of using the patient's own T cells, ALLO-501A uses the same T cells for every patient. If it works, it should be much easier and less expensive -- there is no lab involved in the process of removing and changing the T cells.

The trial is small (which is usually the case for phase 1 trials), and involves patients with Diffuse Large B Cell Lymphoma and transformed Follicular Lymphoma. (These were the same patient populations that were in trials that led to the first round of CAR-T treatments for lymphoma patients.)

One of the patients in the trial has bone marrow biopsy after the treatment to look into low blood counts, and the cells were found to have a chromosomal abnormality. Chromosomal changes in cells can lead to a whole bunch of issues, including other cancers. The researchers are pausing to do some investigating, to figure out if the CAR-T treatment caused the abnormality, and if the abnormality might lead to more problems for the patient (and for future patients).

As the article linked above points out, the patient had a partial response to the CAR-T treatment, and after finding the issue from the bone marrow biopsy, was given an allo stem cell transplant, something that happens with certain patients after other CAR-T treatments, too. 

Aside from the issue with this patient, the data fro the trial has been positive, and seemed like the effectiveness was good enough to justify a larger phase 2 trial. However, trials are about both effectiveness and safety, and the pause makes that clear. One patient's safety is important.

"Off the shelf" CAR-T will be a huge benefit to lymphoma patients, if they are shown to be as safe and effective as other treatments. I hope the patient with the issue is doing OK, and I hope researchers can determine that the treatment is safe enough to continue.

The company that makes the treatment is holding a press conference later today (Oct 8). If anything important comes out of it (more than just repeating what we know already), I'll update.

What Survival Statistics Mean

I used to write a column for Lymphoma News Today a few years ago. You can still find it there, under "columns." It's the one with "hope" in the title.

And even though I haven't written for them for a while, people still read them and I still get comments on them. I know this because the system at that website for dealing with comments is to have author approval. So whenever someone writes a comment on my column, I get an email asking me if I want to approve the comment (otherwise, it won't get seen by anyone), and if I want to respond. It's a good way to make sure there isn't any spam or other useless comments on the site. And it means that even though I haven't written for them in more than two years, I still have access to the site.

Without question, the column that keeps getting the most readers, and the most comments, is the one called "We Need to Talk about Survival Statistics." Someone left a comment for me this weekend, which made me think about it some more. Two things I noticed when I looked at it again -- it was published almost three years ago (on October 5, 2018), and it has 71 reviews, with 4.7 out of 5 stars. (My column, "I Find Hope in Cancer-Themed Humor" has 0 stars. It's dangerous for a writer to read reviews. I'm not even going to link to that one. Find it on your own.)

I'm really pleased with the column because I think it gives what is probably the most important message I try to get out -- learning as much about your cancer as possible is a way to become empowered. I'm not going to tell anyone how to be a cancer patient. We all need to deal with this in the way that makes most sense to us, and I know people (especially some with Follicular Lymphoma) who would rather just not think about it all. 

And that's fine. But I also know that the thoughts are going to creep in anyway, whether we want them to or not, and I think it's better to have good answers to nagging questions.

So when we ask things like "How much time do I have?" or "What does it mean if I read that the survival rate is 8 to 10 years?" I know where my mind went when I was diagnosed and I read that. I think it's important for people to have an answer.

I think it's worth reading the column again. For those of you who are new to this, it will help explain what "Overall Survival Rate" means. And for those of you have been dealing with FL for a while, it's worth being reminded about.

And for what it's worth, the survival rate for FL is close to 20 years -- double what it was when I was first diagnosed in 2008. That's good news for everyone, but it also doesn't mean that we're not all individuals, and statistics tell a story about large groups, not single people. 

I like to remind everyone about that every few years. So this is your reminder. Enjoy the column.