Thursday, April 18, 2013

Spontaneous Remission in Follicular Lymphoma

I'm going to respond to a comment from Jeanne, who asked yesterday about instances of Follicular Lymphoma disappearing on its own. I started to respond to Jeanne in a comment, but then it got too long, so here it is.


Let me start by reminding everyone that I am a Follicular Lymphoma patient. I was diagnosed in January 2008, watched and waited for two years, had 6 courses of Rituxan, and now, for over three years, I have been enjoying my partial remission. (The Rituxan knocked the FL back, but didn't get rid of it completely.)

I am NOT a cancer researcher, or scientist, or a medical doctor. The closest I come to being a doctor is that I was pre-med in college for a semester. (My kids like to remind me of this when I don't have an answer to a health question: "Weren't you a doctor for 10 minutes in the mid-eighties?" So much fun having wise ass teenagers in the house.)

If anything, I'm a Cancer Nerd. I read medical journal articles for fun, when they tell me something that might be useful. I don't know much about other types of cancer, even other types of lymphoma. I like doing all this reading and writing because knowing more makes me feel like I have just a little control. I like knowing what my doctor is saying to me, and I like being able to say, "Yeah, but what about this?" and forcing him to explain why his ideas are better. I do all of this because it gives me hope. And if it gives someone else hope, all the better.

So while I try to be as accurate as I can, you shouldn't take anything I say as medical advice. Ask your doctor about anything that seems interesting or worrisome.


Now, there are instances of Follicular Lymphoma going away on its own. But, to throw some cold water on things right away: it also, more often than not, comes back.

The terms for this are "Spontaneous Regression" and "Spontaneous Remission."

Spontaneous Regression is more common. It involves things like lymph nodes getting smaller, without any kind of treatment. The common term for it is "waxing and waning": nodes get bigger, nodes get smaller, nodes get bigger again. It happens a lot. If a patient is watching and waiting, it's easy to get excited about. You're in that first few months, and you're feeling your nodes every day, still wondering if it was all a mistake, and you realize that maybe, just maybe, they're getting smaller. And you try to be realistic about it, but over a week or two, you are absolutely sure that the nodes are getting smaller. You go for a check up, and sure enough, the oncologist says they seem smaller, and your blood work looks better, too. And you start planning your call to the Vatican to report your miracle, and the onc tells you that it's normal. It's more than a little deflating.

(Even worse is the flip side: you feel them getting bigger, and you panic, and the onc tries to tell you not to worry, because your blood work still looks great.)

So there is some Spontaneous Regression: waxing and waning, where the nodes get smaller on their own, without any treatment. I don't think anyone has ever done any kind of rigorous study of this, but I think I've seen the number as 30% of FL patients will experience it.

Then there's Spontaneous Remission, where the disease goes away all on its own. It does happen. And, as I said, it more often than not comes back. But I've certainly heard of people who never had treatment, experienced Remission, and never had problems for many years. Rare, but possible.

Jeanne asked for a link, so I'll give this one: It's the Spontaneous Regressions page from, probably the best lymphoma patient site on the internet. It has lots of information, plus some links to medical journal articles, Which will excite you if you're a fellow Cancer Nerd.


One more note about Remissions and Regressions: There are a lot of people online who push diets, supplements, or other natural/alternative treatments. They ate 12 pounds of broccoli a day and their Follicular Lymphoma went into remission. There's no way to tell if that one person's experience was because of the broccoli, or if it was just the natural course of their lymphoma, whether they ate 12 pounds of broccoli or 12 pounds of cookie dough every day. You never, ever see anyone online saying their cookie dough diet "cured" their cancer. Which is a shame. But it's worth pointing out that, if you search for "Spontaeous Remission," you're going to get links to a lot of these sites. My suggestion is to treat them skeptically. There's plenty of things that science can't tell us, but the hundreds of studies on R-CHOP can tell us something more than one person's experience with broccoli can tell us. I would love for someone to do a broccoli or cookie dough trial some day, but until that happens, I'm going to put my trust in science.

Hope all of this helps.


Anonymous said...

thank you so much again for all the info! i read about spontaneous regression but not spontaneous remission, and this entry surely answered my query, i guess im the cancer nerd as you term it my husband is not too concerned at this point , his attitude is why panic if its treatable , i on the otherhand read all sorts of cancer info ever since, (we are still waiting for the 2nd opinion result at this point, and its agonizing. although his excisional biopsy result is reactive hyperplasia but a pathologist called me up after a few days that they would like to repeat some stains because a specialist who looked at the slides again suspected FL, hence, another lab), but i was frantic and devastated until i got to read some cancer support group sites and came across your blog by searching long term survivor and your 18 year survivor/macrobiotic diet article link popped up, also just want to let you know that we finally got the answer to why he might have this disease , because FL affects the devastatingly handsome :) wish you and family all the best - Jeanne

Lymphomaniac said...

Thanks, Jeanne. Glad it was helpful. I think your husband has a good attitude. And you're a good wife to be worried on his behalf. Someone told me once that, "in a good marriage, you take turns being crazy." that advice has served us well over the last 5 years.

You found the "devastatingly handsome" posts? Wow -- you went way back.

Good luck with the second opinion. Let us know how it goes.

Anonymous said...

Thank u too, i feel calm and hopeful and yes ive read every entry of ur blog, :) take care!!

Little Torpedo said...

My Mom has Non-Hodgkin's B-Cell Lymphoma. She was diagnosed in 2004 and has never been treated. This year it will mark her 10 years. It has always been a watch and wait. Today we went to UCSF to be seen by a new Oncologist since I moved her to San Francisco with me. He told me that she is in spontaneous remission. Her pet scan was clear of it in January and her blood work up was great. He told me 8% of people with this disease can have spontaneous regression. I call it a miracle.

Lymphomaniac said...

Miracle or not, Torpedo, it's great news. 10 years is an inspiration. Good luck to her.

Anonymous said...

I know this is an old thread, but I wanted to share my own story with follicular nhl. I am a 35 year old woman, diagnosed in 2010. I have experienced more than one spontaneous full remission, no treatment to date. I have not followed any special diet, my faith in Jesus has pulled me through. My oncologist says he has never seen anything like it in his career, nor have his colleagues. In January it will be 5 years since my diagnosis. There have definitely been a few times my oncologist suggested it was time to start treatment, now he says he has seen the impossible happen more than once with me and he is very supportive of my choices. There IS HOPE :-)

Anonymous said...

I just wanted to add to my previous comment (I am the 35 year old woman that just posted) that my lymphoma is grade 2 stage 4 including bone marrow and spleen involvement.