I know I said I was going to talk more about some ASH abstracts, and I promise that I will.
But I had my six month oncologist appointment this morning. Everything still looks good.
I don't really have much to report. It was, as usual, difficult to get there. I see a lymphoma specialist now, instead of a general oncologist, because I wanted someone who could answer my (sometimes very specific) questions. But that means I have to go into the cancer center in city near where I live, and my appointments are usually right around the time the city gets busy. And to make it worse, the parking garage is under construction, so I almost got into three accidents while I was trying to park.
That's not really anything that you want to hear, I know. No one likes to hear someone complain about something like traffic.
But what you do understand is that bad feeling that bubbles up when an oncologist appointment comes up. I was diagnosed almost 15 years ago, and I've thought about cancer every day since then. I don't have the fear of it that I once did. But driving to the hospital for an appointment, even having done it dozens of times, I still get that little bit of stress. And I can see it in myself -- I know when I'm stressed, I get annoyed very easily. So it's not about traffic and construction. It's about those feelings that we all have, whether we were diagnosed 15 years ago or 15 days ago.
But I have to say that the hospital I go to has gotten better over the years. By that I mean it's gotten more personal. For a while, it was all very business-y, and I felt like I was just being moved out as quickly as possible. But it's better now. The staff seem genuinely concerned about patients. I was waiting for my blood draw, and the receptionist in that office told me that if the music was too loud, just let her know and she'd turn it down. (Of course, it was Mariah Carey's "All I Want for Christmas Is You," so I told her it was fine for now, but if it happened a couple of weeks from now when I would be sick if it, I'd ask her to lower the volume.)
My actual appointment with the oncologist was fine -- it always is. He likes that I'm an "easy patient," meaning I don't force him to make difficult treatment decisions. He's still very impressed that I have gotten almost 13 years of Progression Free Survival out of 6 rounds of Rituxan. My physical exam was fine, and my blood work looks good.
Other than that, we talked about my kids and what they are up to, my travel plans for next year, my dermatologist appointment, my colonoscopy, and a few other unimportant things, the kind of things that people talk about when they only see each other every six months.
It was a good appointment.
And more importantly, it was a reminder that I'm still a cancer patient, even if I haven't had treatment for a while. That's a good thing. I don't think I want to forget how that feels. As long as I'm a cancer advocate, I want to keep that connection. It's all much too big a part of my life to just let go.
ASH commentary is coming soon.
Bob,
ReplyDeleteI seem to recall you mentioning that your oncologist had suggested a while back that you could reduce the frequency of your check up to annually, but you decided to keep to six months. As an oncology check up is stressful and creates anxiety, if there is not a clinical need for a six month check up, maybe you should consider annual check ups in future. Especially, as studies show that fifteen years post diagnosis and thirteen years post treatment, transformation and any rapid change in your condition is unlikely.
Hey Bob
ReplyDeleteA regular dermatologist checkup is very important. Since being treated with CAR-T in 2016, my wife (FL, POD24) has had ~15 basal cell and squamous in situ cells removed primarily from her face and arms.
William
William, yes, agreed. This oncologist has been the first of all of them that I have seen who has really pushed my seeing a dermatologist regularly. I'm thankful that he has. I've dealt with cancer enough by now that I'd probably have seen one on my own when weird things popped up on my skin, but I'd already had regular check-ups scheduled, so it was definitely getting checked.
ReplyDeleteAnonymous, yes, we actually did talk about year-long waits between appointments when I saw him yesterday. He is the one who suggested this time that we keep it to 6 months. There is some anxiety on the days I see him, but for the most part I can push the anxiety away. I'm aware of the research, and I know my chances of transformation are much lower at this point, but I think the comfort of seeing probably outweighs the day-of anxiety. Funny how our relationship with cancer changes over time.
Bob
Hi Bob,
ReplyDeleteFollicular Lymphoma is considered as usually incurable, but a chronic condition that many patients will outlive. However, for patients who are ten years plus from last treatment and asymptomatic with no evidence of disease, could they actually be considered cured in the same sense as survivors of most other cancers? My guess is that no one knows, as clinical studies and hospitals seem to rarely follow asymptomatic follicular lymphoma patients for more than ten years after last treatment and the older average age demographic of the illness means that most patients will die of unrelated conditions.
It’s an interesting thought!
Yes, you're exactly right. The idea of being "cured" is a little controversial among FL experts, for exactly the reason you say. Many of us will die with FL, rather than from it. I've never had a fully clean scan -- officially, I had a Partial Response to Rituxan. There has always been a little bit of a glow on my scans. But I haven't needed treatment in 13 years. Am I "cured"? I don't think so. But if I never needed treatment again, and died at a "Normal" age (the same as the general population), would I have been cured? A now retired Lymphoma expert, Dr. Bruce Cheson, calls this a "functional cure" -- still some cancer there, but staying stable. There was an interesting panel about this a couple of years ago: https://lymphobob.blogspot.com/2020/05/are-fl-patients-being-cured-and-should.html
ReplyDeleteAnd I think about it a lot (like I did here): https://lymphobob.blogspot.com/2021/09/some-thoughts-on-being-cured.html
An interesting thought indeed.
Bob