I am indebted to Dr. John Leonard for pointing this one out to me. When I searched for ASH abstracts for FL, this one didn't show up, since it covers "indolent lymphomas," which, of course, includes Follicular.
Dr. Leonard is active on Twitter, and in the days leading up to ASH, he tweets "Leonard's List" -- the 10 presentations he is most excited about. This one is #1 on The List. His comment on Twitter when he named this one as his #1 was this (I'm translating a little bit from Twitter-ese -- I know many FL patients are on the older side, and this kind of this is difficult for you to understand):
Since a large percentage/most indolent NHL patients will live a normal lifespan, here Quality of Life is a key issue/goal in long-term management. The study has important insights for Quality of Life course, reassures patients that Quality of Life likely won't deteriorate despite diagnosis, and patients seem to have psycho-social adaptation.
(Actually, I know most of you could have figured it out, even at your age. I was more concerned with how it would translate for my non-English-speaking friends.)
I appreciate his giving the top spot on his influential list to something that focuses on Quality of Life. As much as we all appreciate research that moves toward a cure (or at least a longer Overall Survival), we need to live with the disease, and the quality of that life can be an afterthought.
So QOL becomes an important factor. There are two approaches to FL research these days. One school of thought says we should go for a cure. But the other approach is to treat FL like a chronic disease, something that will always be with us, but can be managed through medication. I personally am open to either approach. But if I am going to treat FL like a chronic disease, then whatever treatment I receive must take Quality of Life into account.. There's no point in staying alive as long as the general population if I'm going to be miserable doing it.
For this presentation, the researchers acknowledge that Quality of Life can be affected by the disease itself, by side effects from treatments, and from the "psychosocial effects of living with an incurable cancer." (I'll say it again -- Follicular Lymphoma is an emotional disease as much as a physical one.)
Patients with Indolent (slow-growing) Non-Hodgkins Lymphoma (including Follicular) were included in the study. Their QOL was measured at Baseline (from what I can tell, within 9 months of diagnosis) and then 3 years later. QOL was measured using a survey called Functional Assessment of Cancer Therapy-General scale (FACT-G). You can see the survey here. It asks patients to measure their responses to fairly simple statements in 4 areas: physical, social/family, emotional, and functional well-being. So statements for "emotional well-being," for example, include things like "I feel sad" and "I am losing hope in the fight against my illness." Patients respond with how they have felt in the last 7 days.They were also asked to complete a "a single item Linear Analogue Self-Assessment (LASA) for measuring overall QOL."
1050 patients were included in the research (32% of them had grade 1 or 2 FL). At the 3 year follow-up, 577 patients (55%) had received treatment, 42 (4%) transformed, and 53 had an event (progression of disease, re-treatment, or death).
Interesting results:
Emotional Well-being significantly improved over 3 years.
Social/family Well-being significantly decreased.
Functional Well-being, physical Well-being, and overall Quality of Life were not significantly different.
The results were similar whether patients got treatment, or they watched-and-waited.
In patients with an event during the 3 years, emotional Well-being had a significant improvement, but overall QOL decreased.
In patients without an event, improvements were reported in functional Well-being, physical Well-being, emotional Well-being, and overall QOL, but social/family Well-being went down.
In their conclusion, the researchers say that the increase in emotional Well-being is a sign of "psychosocial adaptation by the patient." In other words, we learn how to deal with it.
I think that's probably true. We don't have much choice to adapt, so we adapt. We are, on the whole, very strong people. Sure, we have our bad days, but we get out of bed and get stuff done. That's just the way it is.
It's hard to think back to where I was 3 years after I was diagnosed. I was a year past Rituxan treatments. I think I felt pretty good. It always helps to get a pretty clean scan. I was still running, so my physical Well-being was great. I had support from family and friends. My day-to-day life was OK -- I was still working and playing with my kids. It all matches up for me.
What I found kind of surprising (though as I think about it, it shouldn't be surprising) is that the Social/family Well-being went down.
As I think about it, this, sadly, makes sense. I hear lots of stories from people whose relationships were changed by cancer. family and friends stopped calling, probably because they didn't know what to say. That happens a lot, no matter what kind of cancer.
But people with FL and other indolent blood cancers face a different set of challenges, I think.
When we get a diagnosis, lots of people come to our side. They want to help. And then -- nothing happens. Many of us watch and wait. The heat from the diagnosis starts to die down. Some people might feel a little betrayed. That cancer diagnosis had everyone worried, and now you don't even need treatment? Even worse than the people who don't know what to say are the ones who went on the emotional roller coaster ride with you, and got off before the ride started up again.
Are think there are two big lessons here.
The first is for patients. For many of us, we learn how to deal with the emotions that come with the diagnosis. We are, as I said, a strong group of people. We find ways to deal with it, and we do our best. For some us, though, we don't get the social help that we'd like. The lesson is that it's really important to find a social outlet. If family and friends can't help, then some group that understands what you are going through is crucial. Maybe that's a support group at the hospital you are being treated at. Or an online group (which is what worked for me). A Facebook group. Some bunch of people who can hear what you have to say and respond with "Yeah, I felt that way, too."
The second lesson is for doctors. The physical check-up should be easy. The emotional check-up doesn't always come with the office visit, but it's just as important. And maybe doctors aren't comfortable with that, or aren't trained in that. But having some kind of resources available at hand would be helpful. Just a quick, "How are you feeling, emotionally?" might bring great results. Sometimes just being asked is a wonderful thing.
But the biggest take-away here is that researchers are paying attention to Quality of Life. That's a great thing. Certainly worthy of being #1 on any list.
1 comment:
I was very pleased that Dr Leonard used the opportunity to highligh the importance of this subject, on a conference where cutting edge data on efficacy often get much of the spotlight.
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