A couple of weeks ago, an anonymous commenter asked:
Thank you for your blog! It has been really informative and helpful. I was diagnosed a month ago and reading your blogs has provided much insight into the medical and emotional aspects of this disease. I was wondering if you would consider doing an outline of the current treatment options available at this time. There is a lot of information out there and it can get confusing in terms of what the current options are. Thanks again!
My response was to list a few, with the warning that I'd surely miss something, and to check the "Treatments" section at Lymphomation.org for more detail. I still think that's pretty good advice, but I also came across a piece in The Pharmaceutical Journal a couple of days ago that lays out current treatments for a few different types of lymphoma, including Follicular Lymphoma. It seems like the kind of list that the reader above was looking for.
But here are some warnings about the list:
First, it was published in a journal that is put out by the Royal Pharmaceutical Society. It refers to treatments that have been approved in the United Kingdom, not necessarily the United States. I think everything discussed here is also available in the US, but there may be some small differences in dosage, or in stage of treatment (frontline or refractory -- that is, some treatments are approved for patients as the first treatment they will have, while others are approved for patients who have already had certain types of treatments that stopped working).
Second, the author of the article gives his opinions about some of the treatments, and while he is objective about a lot of it, and gives links to specific articles in medical journals, he also throws some opinions in there, directly and indirectly. Goodness knows I don't have any objection to opinions, since I throw so many out there myself. But I think some commentary on some of what he says is necessary.
Third, it sounds to me like the person who wrote the comment above does not have an aggressive form of Follicular Lymphoma. A month in, and still considering treatment options? The oncologist must feel like there is some time to decide. I was in the same situation, and that colors the way I look at this article. Aggressive forms of Follicular Lymphoma require different decisions.
So here's some of what he has to say, with my commentary:
- “Common Chemotherapy Schedule for non-Hodgkin Lymphoma”
The author provides a nice chart with the treatment schedules for four different types of traditional chemotherapy with Rituxan. I’m not going to pretend to know if those are the same dosage schedules for the US. Honestly, I have no idea. But it is important to note that all four (R-CHOP, R-CVP, FCR, and R-Bendamustine) are available in the US, and are still used. In fact, the commenter left the comment on a post I wrote about these chemos. So I don’t need to get more into my feelings about them, other than to say, I think they’re on their way out, especially the first three, and that’s a good thing. They still have a place in Follicular Lymphoma, but I think if an oncologist suggested one of them as a first treatment, I’d have a conversation about why, and why other options aren’t being considered.
- “R-bendamustine is increasingly being used as the combination schedule of choice.”
And if an oncologist is in favor of chemotherapy, R-Bendamustine would probably be the best choice of those four mentioned. The author acknowledges this, discussing how R-B has results as least as good as R-CHOP, but with less toxicity and fewer side effects. He also points out that Fludarabine (in the FCR combo) is no longer recommended in the latest European treatment guidelines, since it “has been found to increase rates of haematological toxicity” (which I think means it might give you a secondary cancer).
- Follicular lymphoma often presents asymptomatically and does not always require immediate treatment. Treatment is usually reserved until the patient becomes symptomatic, which occurs a median of 2.5 years after diagnosis, but can be more than 10 years.
I think this is more or less true, though I would quibble over "treatment is usually reserved until the patient becomes symptomatic." That's describing watching-and-waiting, and I don't think it's accurate to say that W & W is the "usual" strategy. I think it's just the opposite, with maybe a quarter of patients holding off on treatment. Whether or not to begin treatment immediately, let alone which treatment to try, is still a big controversy in Follicular Lymphoma, at least in the US. I think that matters. Watching and waiting is a big decision, one that involves emotional and not just physical factors. It's a false impression to imply that most patients watch and wait until they show symptoms.
- "Treatment with rituximab at diagnosis is currently being evaluated in clinical trials and, although it has yet to demonstrate an overall survival benefit, it does appear to improve progression-free survival rates."
And this is about all he has to say about Rituxan. I think it plays a much larger role in first-line or initial treatments for patients in the US, whether or not they have symptoms. It's an option, and a very valid option, for someone who is considering a first treatment. It's also such an important part of Follicular Lymphoma treatment (it's part of all of those chemotherapy options without ever being discussed) that maybe it's easy to take for granted and overlook. It should be overlooked.
- "Patients who present with limited disease can be treated with radiotherapy alone, which may cure the lymphoma."
Here, he's talking about stage 1 or stage 2 disease, something very limited and isolated, that can be treated with radiation, the way some solid cancer are treated. The problem is, only about 15% of Follicular Lymphoma patients are diagnosed at this early stage, since they are often without symptoms.
And this is where I might talk about RIT -- RadioImmunoTherapy. Liquid cancers like FL, with that stage 1 exception, can't be treated with traditional radiation, since blood cells have a tendency to not keep still (since they are moving through the blood). RIT tracks down those cancer cells and brings a dose of radiation directly to them. It's a treatment that works for a lot of people, and for a lot of reasons is not used as much as it should be. This article is just further evidence that RIT is ignored.
- "It is unclear whether ASCT should be used in preference to rituximab
maintenance therapy in follicular lymphoma. Younger, fitter patients may
be considered for an allogeneic stem cell transplant using reduced
intensity conditioning, as this is the only potentially curative option
for this form of non-Hodgkin lymphoma."
And finally, he discusses Stem Cell Transplants. And again, this could use more space than it receives here. He refers to Allo Stem Cell Transplants, but there are also Auto SCTs, and both types are used for different purposes.
The article also includes some "future treatment options," including Ibrutinib and Idelalisib. There are even more than that, of course.
I don't think this is a bad article. It's not really meant as a definitive guide for patients, so it would unfair to criticize it for not being one. But I also think it's important to read carefully.
I'll give the same advice as before: for more information, Lymphomation.org is a good place to go. Lots of other websites give some basic infiormation about the different types, but, like this article here, you end up getting only part of a story.
The best place to go for information is your oncologist. He or she is the one who knows you and your situation best.