Join Me on Instagram This Thursday!

Hey everyone. 

Just a reminder that I will be a guest on the Instagram Live series "No Time Like the Present." I'll be talking about Follicular Lymphoma, my life as a patient, and anything else that comes up in this open conversation.

The host of the series is Yolanda Brunson, who goes my the Instagram handle @MyelomaChick. Yolanda is many things (as you can see from her biography on Blood-Cancer.com), including an advocate for patients with Multiple Myeloma, another type of blood cancer. She's great.

If you can't make it on Thursday at 7:00pm EST, you should be able to watch it afterwards on YouTube (I'll post a link after Thursday). But I hope you'll join us Thursday if you can. It's easy if you're on Instagram already -- just go to @MyelomaChick on Instagram and you'll see the two of us. As you are watching, feel free to ask questions by writing in the comments. I hope some of you can make it.

 

Zevalin: Real-World Success for Follicular Lymphoma

First, a quick colonoscopy update: I had a biopsy during the procedure, and it came back benign. Right after the procedure, the doc said everything looked good, but now it's official.

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Now, back to Follicualr Lymphoma.

Nice article from about a month ago in Clinical Lymphoma, Myeloma, and Leukemia called "Real World Long-term Follow-up Experience with Yttrium-90 ibritumomab tiuxetan in Previously Untreated Patients with Low-Grade Follicular Lymphoma and Marginal Zone Lymphoma."  

Yttrium-90 ibritumomab tiuxetan is the scientific name for Zevalin, a type of RadioImmunoTherapy (RIT). The last time I wrote about RIT was in January. It doesn't get a lot of attention these days, except for Betalutin (which you can read about in the link). To remind you: Radiation is an effective treatment for lots of cancers, but not blood cancers, since blood cancer cells move around too much for radiation to work. So along came RIT. It basically works by taking a little bit of something like Rituxan, which can find and attach itself to a blood cancer cell, and adding a tiny bit of radiation to it. So when the Rituxan finds a cancer cell, it can deliver the radiation right to it. 

Zevalin was one of the first two types of RIT to be approved for Follicular Lymphoma. It was very successful in clinical trials, and I know two people who have had very long remissions after Zevalin. The problem has been, at least in the U.S., that Zevalin is complicated to deliver. Not because of the way the treatment works, but because there are rules in place for who is allowed to give the treatment, since working with radiation requires special training. So Zevalin has never been a popular treatment -- not as popular as something that is so effective.

Because it has been a fairly under-used treatment, there hasn't been much done in clinical trials, where records are kept to show how successful a treatment has been. This study is a "real world" study, that is, looking at patients outside of clinical trials. 

The results are great.

Because this isn't a trial, the researchers look at records of patients who had Zevalin as a first treatment, and determine how well they did on the treatment. The study looked at 51 patients, with 41 of them diagnosed with FL. The median follow-up was a little over 5 years. Of those patients, all 51 had a response to Zevalin, with 94% of them getting a Complete Response, which is pretty amazing. (Remember, about 70% of CAR-T patients had a response in early trials, though that number is going up.) After 2 years, about 59% of those patients continued to have a CR (it's about half that in CAR-T). And about 25% of them had a long-term CR of over 7 years.

Those are pretty great numbers for effectiveness. As for safety, again, the numbers are very good. More serious side effects (grade 3 or higher) for thrombocytopenia (low platelets) was 47%; neutropenia (low white blood cells) was 37%, and anemia (low red blood cells) was just 4% . Sometimes radiation treatments can cause other blood cancer likes myelodysplasia or acute myeloid leukemia, but none were found in this group. 

So, overall, Zevalin continues to be a really good treatment, with short-term and long-term effectiveness, and manageable side effects for most patients.

I'm not sure it will ever be a popular choice, but it's still there for us. And maybe Betalutin will turn out to be just as effective, but with some incentive to make it easier to administer. In the meantime, we still have some other choices, which is a good thing.

Colonoscopy

I had a colonoscopy this morning. Everything looks pretty good. I'll hear about biopsy results in a week or so, but the doctor isn't concerned.

I assume everyone knows what a colonoscopy is, and why it's important. In the U.S., it is recommended that we get a colonoscopy at age 40 (it used to be age 50 until fairly recently), and then every 10 years, unless there is an issue that makes it important to get one more frequently. 

I had my first colonoscopy 10 years ago. The lymphoma and some other issues put me at higher risk, so I went with the recommendation to have it done. So there were no real surprises this time, at least as far as what to expect with the procedure.

And if you have had one, or you know someone who has, then you know what that means. The preparation for a colonoscopy is not fun. Someone I spoke to about it a couple of days ago called it "character building." 

But I knew what to expect, like I said. Really, the prep is annoying, but for me, the worst part was the bad music that was playing in the operating room. It was awful. I was sure they were going to play a Nickelback song while I under anesthesia, and then it would be in my head all day and I would not know where it came from. 

As a I said, everything looked good. I did have a "benign-looking" polyp removed, which will be biopsied. Also, some mild diverticulosis. I need to eat more fiber.

I'm sharing those details becuase, as you know, I think it's important to talk about these things. Especially something like a colonoscopy, which some would consider "impolite." 

But people also used to think talking about things like breast cancer was "impolite," and that wasn't good. It meant people didn't get tested because it was too embarrassing. We can't let that happen anymore.

I assume anyone reading this shares the same attitude, and understands the importance of getting a colonoscopy. If not, please keep reading. And if you know someone else who might be reluctant to get one, please share this with them:

If you are eligible to get a colonoscopy, please get one. You've probably heard about the procedure, and how unpleasant the prep is. If that's what holding you back from getting the procedure, get over it. A few hours of discomfort and inconvenience is worth the peace of mind. As a cancer survivor, I know it's nothing compared to the physical and emotional pain of getting a diagnosis and treatment for you and your family. Just get it done.

Stay well, everyone.

 

How Patients Make The Treatment Decisions

The British medical journal BMJ Open has an interesting article this month called "Treatment Decision Making (TDM): A Qualitative Study Exploring the Perspectives of Patients with Chronic Haematological Cancers." It looks at a small number of patients with chronic blood cancers (35 patients in all, with 8 of them being Follicular Lymphoma patients), and what influenced the decisions they made about which treatments they decided on.

The results aren't all that surprising to me (the patients considered a lot of different factors), since I communicate with so many FL patients. But it is interesting to see the thought processes behind the way people make those important decisions. 

The patients in the study had a few different chronic blood cancers (FL, but also CLL, MZL, and Myeloma). By "chronic," the researchers mean a cancer that is likely to come back -- the kind we live with for a long time (I'm sure you all understand what that means). Because our cancers are likely going to need several different treatments over our lives, we probably have more things to consider when it's time to chose a treatment. (Thinking of people I know who have had aggressive cancers, they seem more likely to say to a doctor, "Yes, whatever you say, just make it happen!") But for us, we (and our doctor) are more likely to have to consider things like quality of life, and which treatments we've already had, and what might be available soon. It's a more complex process.

And that's basically what the research found.

The researchers ultimately found five themes in the interviews:

1) Preference for Clinician Recommendations. While most of the patients in the study wanted to have a discussion with their doctor (though a few had the "Yes, whatever you say!" approach), almost all wanted the doctor to make a recommendation. This makes a lot of sense to me. As much as I know (or like to think I know) about current treatments for FL, I still want my oncologist to tell me what he thinks. He's read the literature, but he's also seen hundreds of patients, and seen how the treatments worked for them. I want his input. I need his input. I don't want to make that decision on my own. That would be foolish. But I want to make sure he knows what is important to me.

2) Factors Implicated in Patient Involvement. This theme got into why certain patients wanted to be as involved as they were. Some patients do want a lot of input, and others don't. There are a lot of factors that influence this, including how complex the decision will be, how much support the patient has from others, and their emotional state. Again, this makes a lot sense to me. Even for someone who is highly informed, there are lots of things to consider. That could even change day to day.

3) Proactive and Non-Proactive Approaches. This was more about what kind of person the patient is, and what they have access to, that allows them to be proactive about treatment decisions. Some people have the time, the internet access, and the personality to do the kind of research that allows them to have a voice in the decision. Others don't, though they may wish that they did.

4) Experiences During the Disease Trajectory. Here, again, is a theme that make s a lot of sense. Patients might behave differently at different points in time. Someone who has just been diagnosed might be more likely to say "Yes, sure, whatever you say, doctor." But someone who has been living with the disease for years, and maybe has already had a few treatments, might be more willing to say, "OK, thanks for the recommendation, but can we talk about this other treatment, or this clinical trial, as another option?"  

5) Support from Others. The final theme is about the importance of having input from people other than the doctor. This might mean having someone at an appointment who is clear-headed enough to ask questions and take notes (a very good thing to have). It might also mean having someone at home, after an appointment, to talk through a decision with. As great as it is to have a doctor who can be trusted, it's also great to have a friend, or a family member, or a caregiver to talk things through with. I've been on both sides of this -- having a loving wife who I can talk things through with, but also getting emails from some readers asking for my opinion (which I'm happy to give). It helps to talk, whether it's about the treatment itself, or about other issues, like your fears and worries. It's just easier to agree to a treatment after you feel like you've considered it thoroughly.

These general themes give a good sense of how many different factors we have to consider before we make a treatment decision. They also give some good advice what you might want to think about when the time comes to make a decision.

But I would recommend you read the article (it should be available to everyone, since the journal is open-access). It includes lots of quotes from the patients who were interviewed for the study. It was interesting to me to see how they made the decisions they made. I'll bet many of you will see some of yourselves in those quotes.

I hope none of us need to make any treatment decisions anytime soon. Good luck to those of you who do.