Rituxan Maintenance?

Rituxan Maintenance is a very big issue in the Follicular NHL world these days. It's the practice of giving post-chemo patients one or more courses of Rituxan, as a way of cleaning up any residual cancer cells, months after the initial chemo. The time span, and the number of rounds per course, vary depending on the doctor and patient. There's some good evidence to go with either side of this issue -- give the R maintenance, or treat only as needed -- which is why it's still so controversial.

The most recent bit of evidence showed that R maintenance does not increase Overall Survival in fNHL patients. (This came from a presentation at this year's ASH conference.) When I was finished with my own (first-line) Rituxan treatment, I asked Dr. R what he thought of maintenance. After our discussion, I decided not to pursue it; he convinced me that the evidence did not suggest that it would be worth the time and expense. Of course, this was post-Rituxan, not post-chemo, and there is much less evidence either way for my situation.

And while I am pleased with my own choice (it's been over 2 years since my last round of Rituxan ), the larger question remains of whether or not R maintenance is still a viable option for most fNHL patients.

The upcoming issue of Oncology Times features a Point/Counterpoint on this controversy, a summary of a live debate between two Lymphoma Rock Stars: Dr. David Mahoney from Fred Hutchinson in Seattle, who took the pro-maintenance side, and Dr. Bruce Cheson of Georgetown, who took the anti-maintenance side. [Full disclosure: if cancer researchers had their own baseball cards, and I opened a pack to find that I got a Bruce Cheson, I'd pee my pants with delight. And, yeah, it's weird enough to have a favorite lymphoma researcher, let alone be that excited about it, but that's what happens when you blog three or four times a week about cancer. I'm at peace with it.]

A live audience listened to the two Rock Stars make their cases, and then voted on who was more persuasive. Much to my chagrin, Maloney's pro-maintenance argument won out. (But I still love you, Bruce Cheson.)

But there was some interesting information in the debate anyway, that i hadn't heard before, including the moderator's statement that he sees a rise in infections from patients on maintenance, including sinus infections that can't be cured with antibiotics, and require a more expensive treatment.

So the pro-maintenance folks seem to have won this round, but it's pretty clear that, like much having to do with Follicular NHL, there are no easy answers.

Still, I think healthy debate is a very good thing. More information, more provoking of thought, for doctors and for patients, can only help us all.

Cholesterol and Daffodils

First off, I got the blood test results from my physical a couple of weeks ago, and they look good:
 Cholesterol is 184, with similar positive numbers for LDL, HDL, and triglycerides. They are all slightly elevated from last year (when my cholesterol was 181), but all well within healthy range. PSA, thyroid, and vitamin D levels are all great.

And, while this isn't a blood test issue, I do want to report that I haven't had an asthma-related problems in two weeks.

Also I ran 4 and a half miles on Saturday.

So things are looking pretty good all around, physically.

And while, as a cancer patient, I always know not too get too confident about my health, I will point out that the daffodils are blooming in the backyard. They are a patron flower of cancer survivorship, showing up, reliably, every spring, and bringing hope.

So we'll just end it there -- on a happy note, without overconfidence, and with continued hope.

Giving Bad News

From the blog KevinMD, a brief piece from on oncologist on the difficulty of delivering bad news. The doctor/writer is realistic, I think, about the issue: "This has always been the toughest part of my job, but it’s also the part patients need me to handle best.  I have to remind myself that no matter how hard it is for me to give bad news, the patient and their families are the ones receiving it."

He also laments his own lack of formal training in the area, and is pleased that more medical schools are paying closer attention to providing this kind of training. I actually asked Dr. R if he was given any training, and he did say that he was given a seminar on the subject. Certainly more than I can say for my general practitioner, who delivered the news to me (and who, thankfully, is no longer with the practice, so I don't need to avoid her when I go there).

I've told the story before, but I'll tell it again, because it's one of those experiences that cancer patients all remember and share.

It was horrible. The doctor called me and asked me to come in to talk about the biopsy, making the appointment for three hours later, and refusing to give me any news over the phone (which, of course, made me suspect something bad, which negated the whole "face-to-face" strategy that she seemed to have in mind). Then she made us (me and my wife) wait for thirty minutes before she came in to tell me. And when she did come in, the first thing she said was, "Stressed?" (One word -- not even a complete sentence. Uh, yeah, I'm stressed.) She then refused to answer any of our questions about what follicular lymphoma was, saying the oncologist would answer all of them, and then offered to write us a prescription for anti-anxiety meds (which we refused, thinking a couple of clear heads would be better at that point). I have nothing against anti-anxiety meds, which have done wonders for some of my support group friends, but giving me drugs seemed to be at the heart of her whole strategy, which is why she wanted me there, and why she asked first, before anything else, if I was stressed. Not the best way to approach a bad news situation. And neither was, simultaneously, pushing me off onto the oncologist.

The doctor who wrote the KevinMD blog post refers to something called the SPIKES technique, described in an issue of The Oncologist from 2000. The technique refers to a six-step process for delivering bad news. It involves:

1. SETTING up the interview, in a private area, where the doctor can sit down, to show she's not in a rush.
2. Assessing the patient's PERCEPTION, using open-ended questions to determine the patient's knowledge of her situation.
3. Obtaining the patient's INVITATION, finding out how she would like to get the news.
4. Giving KNOWLEDGE and information to the patient. Strategies like giving some warning ("I have bad news to tell you") might lessen the blow.
5. Addressing the patient's EMOTIONS with empathic responses.
6. STRATEGY and summary, because patients like to have a plan.

The funny thing is, looking at this list, I think my general practitioner might have actually been trying to implement this technique in some way.

1. She did SET UP THE INTERVIEW, calling me and then making me wait all that time in a room by myself (with my wife, of course), to ensure privacy. And I distinctly remember she sat down.
2. She did assess my PERCEPTION, asking me an open ended question ("Stressed?")
3. She did not do the INVITATION thing, from what I can remember. I think she went right into the biopsy results.
4. About the only KNOWLEDGE she gave me was that I had follicular NHL.
5. She did address my EMOTIONS, assessing that I was in shock and pulling out her prescription pad.
6. And she did have a STRATEGY for me: don't ask me anything. Ask the oncologist that I'm setting up an appointment with.

Or maybe not. She might have been half-listening at the Bad News seminar she want to.

Anyway, I'm clearly on board with the whole idea of better training for doctors in giving bad news. It's a hard enough road to travel; we don't need the journey to start out bad.

Happy St. Patrick's Day

A Happy St. Patrick's Day to you all. 

We're off to a corned beef and cabbage dinner in a little while, but I thought I'd at write a quick entry before we left.

I try not to stray too far from the general topic of cancer in the blog, at least not for two posts in a row, so I'll offer you this joke, from an Irish humor website, in the spirit of the day. (It's actually one I posted on the blog way back in February 2008, not long after i was diagnosed, and looking for something to laugh at, but it's worth repeating):

An Irishman named O'Malley went to his doctor after a long illness.  The doctor, after a lengthy examination, sighed and looked O'Malley in the eye and said, "I've some bad news for you. You have cancer, and it can't be cured, you'd best put your affairs in order."

O'Malley was shocked and saddened. But of solid character, he managed to compose himself and walk from the doctor's office into the waiting room.

To his son who had been waiting, O'Malley said, "Well son, we Irish celebrate when things are good, and we celebrate when things don't go so well. In this case, things aren't so well. I have cancer. Let's head for the pub and have a few pints."

After 3 or 4 pints, the two were feeling a little less somber. There were some laughs and more beers. They were eventually approached by some of O'Malley's old friends who asked what the two were celebrating.

O'Malley told them that the Irish celebrate the good and the bad. He went on to tell them that they were drinking to his impending end. He told his friends "I have been diagnosed with AIDS." The friends gave O'Malley their condolences, and they had a couple more beers.

After his friends left, O'Malley's son whispered his confusion. "Dad, I thought you said that you were dying from cancer? You just told your friends that you were dying from AIDS!"

O'Malley said, "I don't want any of them sleeping with your mother after I'm gone!"





Have a good one!