I got some really interesting comments on my last post about watching and waiting. I started to respond to them in the comments, but I thought it might be easier to respond to them here in a new post.
Just as a reminder: I was diagnosed with Follicular Lymphoma in January 2008, stage 3, grade 1 and 2. Various tests at the time suggested I could watch and wait, and after a month, I had another scan, which confirmed that things weren't growing very quickly. My oncologist recommended I watch and wait. His reasoning was, at least back then, there were not a lot of treatments available. Since this disease is considered incurable, the thinking back then was that it was better to hold off on treatment if you could, since you would probably need a bunch of them, since the disease would keep coming back.
None of that happened to me. I watched and waited for two years to the day, starting Rituxan on the two year anniversary of my diagnosis. I haven't needed treatment since. I think we know more about FL now, and there isn't the assumption anymore that we'll all be on that same path -- needing multiple treatments, with the time between treatments getting shorter, and the disease getting more aggressive each time it comes back. That does happen with some FL patients, but with more and better treatment options, many of us have more time between treatments, and there isn't a definite pattern of having the disease become more aggressive and resistant to treatment over time.
Even though I went through watching and waiting based on some old assumptions, I still don't regret the choice. It worked for me, and I' do it again, even with all of this new knowledge.
Now, on to the comments.
A couple of readers shared that they are now watching and waiting -- one for 2 months, and one for 11 years. It's fascinating to me that there can be such different experiences with the same disease.
One of those readers (they both posted anonymously, which is fine, but it means I can't address them by name) said "Thank you for this. I was diagnosed with 'Follicular Lymphoma' 2 months ago & am in the Watch & Wait phase. Will show this study to my oncologist & possibly start maintenance therapy. Honestly, I have no desire to undergo any therapy, so I was okay with Watch & Wait. But as it stands, I would get a greater benefit from starting retuximab & maintenance therapy sooner."
Let me remind everyone first that I am not a doctor, so my medical opinion means about as much as an overly friendly guy sitting on a bar stool next to you. I do think that studies like this provide data that can help us make decisions, but it's also important to remember that when a study discusses statistics, they are always the median of a group -- in other words, the exact middle, so exactly half of the people in the study did more or better (of whatever is being studied) than the median, and the other half did less or worse. There's never any guarantee that you'll get the same result (in fact, "median" means the chances are 50/50 that you'll get the same result). Statistics aren't destiny. If you really have no desire to start therapy, and there's no physical reason to, then watching and waiting some more is still an option. I think it's smart to talk to the oncologist about it. Ask lots of questions and make sure you're satisfied with the answers. And let us know what you decide.
And since you're just two months into this life, I'll say to you what so many said to me almost 15 years ago: I'm sorry you had to hear those words on the day you were diagnosed, but I'm glad you found us. Good luck with the chat with the doctor.
The other (11 year) watch-and-waiter pointed out that Covid has affected their choice, and they are happy to stay on watch and wait until things have calmed down some more. This makes sense -- treatments for FL will all lower our immunity to some extent, and lower immunity is not what we want during a viral pandemic. So that's probably a good choice -- if it's been working for that long, stay with it until there's reason to stop.
(That's the kind of wisdom that 11 years of watching and waiting will bring. It takes some real self-knowledge to live that long while knowing you have cancer. That's awesome.)
Another anonymous reader asked, "Is there actually a reason why maintenance therapy with rituximab is stopped after 2 years? What would be an argument against maintaining a maintenance therapy as long as the patient tolerates it and possibly keeps the tumor burden within limits?"
Excellent question, and there is a good answer. Simply put, Maintenance lowers immunity and increases the chances of getting a serious infection. There was a report at ASH about this in 2018. Researchers split FL patients into two groups after they had four rounds of Rituxan and had a response from it. One group had Rituxan Maintenance for 6 months, and the other had it for 5 years, They found no major differences between the two groups in their Event-Free Survival, Progression-Free Survival, or Overall Survival. In other words, more Rituxan didn't make them live longer or keep their disease away any longer. This was true even after 10 years of observing the two groups. But there was a difference in the problems it caused. Rituxan goes after cells with the CD20 protein on their surface, meaning the B Cells that turn cancerous in FL. But it also goes after healthy B Cells, not just the cancerous ones. And B Cells are an immune cell. So 5 years of wiping out healthy immune cells means greater risk of infections, but with no benefit. Two years seems to be the right balance between effectiveness and safety.
Finally, reader Liz did what I requested, and found the original research that the ASH study was referring to. I had said that this year's ASH abstract mentioned Quality of Life but didn't get into any detail about how the measured Q of L. Liz found the details for us. You can find a link in Liz's comment from my last post, in case you want to read the details. But basically, as Liz points out, the study shows that FL patients undergoing maintenance were less worried than those watching and waiting.
However, as Liz says, "I think its relevant to note that baseline scores were generally high but equally important there was no significant deterioration in physical or functional wellbeing scores within the treatment arms. I think having looked through all this, that it's so important to have informed conversations with our doctors about our individual treatment priorities and concerns. Watch and wait is still an appropriate choice for many but moving to treatment earlier does have potential benefits and may just be worth a more detailed initial discussion at diagnosis. I'm not quite clear why some of us aren't given that opportunity for discussion."
And that's really what this is all about -- watch and wait is one option, but there are a bunch of others. And as much as I'm happy to give you my opinion, and as much as data from great studies can give you things to think about, the best person to talk to is you doctor. Hopefully, they can help you think through all of it -- the best treatments available, your psychological and emotional needs, your goals (going for a long time between treatments? Ok with something more aggressive?), and anything else that might affect your choice.
And Liz, 6 months into watching and waiting, good luck to you, too. Keep us updated.
And good luck to all of you who are watching-and-waiting. I know it's not easy. But it does get easier with time, and as I said last time, I think it does ultimately make us stronger.
Thanks for the comments everyone. Stay well.
More ASH soon.
Hi Bob,
ReplyDeleteIf I recall correctly, you said in the past that your rituxan treatment was driven by clinical need and the recommendation of your oncologist. The reason I highlight this is to differentiate between those like me who have not had a clinical need so far and are therefore still on watch and wait for over 11 years.
I asked my haematologist/oncologist some time ago how long could I be on watch and wait and was told that they had some follicular patients still on watch and wait for over 30 years.
I do not want to give people unrealistic expectations, but have read clinical studies that show around twenty per cent of patients are still on watch and wait for well over ten years. If you add to the equation that the median age of follicular lymphoma patients at diagnosis is 60, then there will be a reasonable number of patients who die of other unrelated old age illnesses, before follicular treatment is needed.
I am now in my mid sixties, so my physician is more concerned about matters like maintaining a healthy weight , cholesterol and keeping blood pressure in check! As at my age I am more likely to die with follicular lymphoma than because of it, hopefully like the majority of follicular lymphoma patients nowadays.
Just one final point, a physician told me that starting treatment before there is a clinical need can wind the clock forward, by weakening the immune system through treatment before it is necessary. As follicular lymphoma is still an incurable disease.
Yes, you are correct -- my watch and waiting ended because of clinical need. Nodes in my hip had gotten big enough to block something that caused swelling in my left leg. Not a medical emergency, but clearly something that needed to be taken care of.
ReplyDeleteMy sense is that any doctor who encouraged w & w in the first place would be fine with staying with it until there's a reason to stop. I don't recall a study that says 20% of watch-and-waiters stay that way for 10+ years, but I wouldn't be surprised by it. I was diagnosed at 40. I wonder how any people diagnosed at 60 have had asymptomatic FL for 10 or 20 years -- unaware that they were watching and waiting. And I'm sure there are a great many patients who do end up "dying with" rather than "dying from," never having needed treatment.
I still maintain, though, that watching and waiting is ultimately patient choice, and while clinical (physical) need may not be present, lots of patient have emotional symptoms, and need to feel some sense of control. Giving up watching and waiting, and beginning a fairly less-aggressive treatment, may help. I can't say my 6 round of Rituxan has affected my immune system greatly (I've stayed fairly healthy), but I se the point.
I'm happy to hear about your long-term watching. I hope it lasts for you, and you are a "with" for a very long time.
take care.
Hola Bob, soy Marcela de Canarias.
ReplyDeleteHe estado un largo tiempo alejada, la muerte de mi madre ha sido lo peor para mi, ahora estoy algo más calmada.
Mi linfoma folicular lleva ya desde el 201O donde apareció mi primer ganglio y en el 2012 biopsia y diagnóstico de linfoma folicular estadio cuatro grado1. Han transcurrido 12 años desde el primer ganglio y 10 desde la biopsia, sigo sin tratar, nunca me he dado tratamiento, incluso alguno ganglios más grandes se normalizaron y otros son imperceptibles, sigo bien gracias a Dios. Tengo hoy 56 años pero tenía 44 años cuando todo empezó. Realmente muy joven, mi carácter cambio, mi vida cambio, la cabeza sobre todo y el humor decayó. Sigo bien, adelante, mi hija acabó la universidad, aún hay cosas que ver aquí. Sigamos adelante.
Un abrazo Bob mucha salud para usted y para todos.
Hi Bob, I thought I would give you a little update regarding my treatment decision.
ReplyDeleteTo make a long story short, I am still in the 'watch and wait' phase, although I was initially leaning towards doing chemoimmunotherapy right away.
A major reason for this was the consideration of possible resistance to rituximab and the associated risk of having fewer treatment options in the future.
What got me thinking was this article in Wired magazine, questioning common applications of chemotherapy, because they may be causing resistance in the first place. We have great drugs that unfortunately lose their effectiveness over time because of resistance, and so a different dosing strategy might be in order. So it's no longer about cure, but about prolonging PFS by keeping sensitive and resistant cells in check at the same time. This is based on evolutionary principles.
I think this would be an interesting approach especially in an indolent cancer like follicular lymphoma.
https://www.wired.com/story/cancer-treatment-darwin-evolution/