Visit with Dr. R

I had a good visit with Dr. R today. No changes -- everything looks good.

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Actually, there was one change, but it didn't involve me.

The practice is no longer independent, but is now affiliated with/run through Yale-Smilow Cancer Hospital. This is not necessarily a big deal (I can, for example, get my scans anywhere I want, not just at Yale), and the doctors and staff are all the same at the office. But there were some very obvious small changes: I have to get an ID bracelet when I arrive, just as if I would if I went to the hospital; it took them about 15 minutes to call me in for bloodwork (gone is that nice sign that said, "If you have been waiting for more than 10 minutes, please come and tell us at the desk"); and when they took my weight, it was in kilograms, not pounds. Also, the computers were all down because Yale was installing new software.

The change-over came on January 1, so it's only been a week under the new management, and they're naturally working out some kinks with all of the new procedures. I go back in May, so I'll withhold judgement on the changes until then....

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Anyway, Dr. R said my bloodwork was "perfect" -- no signs of any problems. The physical exam revealed nothing wrong. And I'm feeling fine. So we're good for another 4 months.

The visit with Dr. R was a little different, though -- he seemed slightly more harried, maybe a little rushed. We didn't have quite as long a chat about our families -- that sort of thing.

He did give me a quick update on possible future directions for treatment, when I mentioned it's been just shy of 2 years since I had the Rituxan. He told us there was a "second-generation Rituxan" that was now being used. It's also an anti-CD20 monoclonal antibody. I knew just what he was talking about -- Ofatumumab -- but I didn't want to be obnoxious about it all and say the name, which he clearly couldn't remember. So he danced around his own forgetfulness, telling us that there were a bunch of Rituxan alternatives out there, with some slight variations ("Yes," I thought to myself, "they are humanized monoclonal antibodies"). He told us, still dancing around the name, that some of the Rituxan alternatives were derived from non-human sources. At this point, Isabel also frustrated with his not being able to remember stuff (or remember he was talking to a cancer research nerd), mouthed to me "mice!" without him seeing. He finally remembered that the source for these antibodies like Rituxan was mice, which made me and Isabel both smile. He also mentioned that there were some other antibodies being developed, some that targeted other CD proteins, like CD22 ("Yes," I thought, "that would be Eprituzamab").


I'm going to chalk up Dr. R's forgetfulness to the changes in the office management, which seemed to be throwing off everybody in the office in some way. And I want to point out again how good I was to not show him up with my own knowledge of current treatment options, and in not giving him the URL for this blog so he can learn more about all of this stuff on his own.

The bottom line is, I'm still healthy, everything looks good, and we can breath easy for a little while, anyway.

Betsy's Cancerversary

I'm going to celebrate someone's else's 10 year anniversary today: Betsy de Parry's. Today is 10 years since she's been diagnosed with lymphoma. More importantly, as she announced on Facebook two days ago, she just had a clean CT scan, and is now "disease free for 9 years, 3 months and 26 days. But who's counting?"

Regular readers know who Betsy is: author of the book Adventures in Cancerland, producer of the PBS series Candid Cancer, Lymphoma Goddess, and author of a column about cancer on AnnArbor.com. Her most recent column, "A Decade After a Cancer Diagnosis: Musings on Life," features her announcement about her good scan news and her cancerversary.

Betsy reflects a lot on some of the lessons she's learned in 10 years, and one really speaks to me today (as my own cancerversary approaches): "Cancer may leave our bodies, but it never leaves our lives."

She's talking about the bodies and lives of fellow cancer survivors, of course. She quotes some friends' wisdom on the same topic:

As a friend of mine says, "When your world has crashed before your eyes, it's hard to remember that anything could be something other than cancer."
Another adds, "We're scarred by our diagnosis. Every ache is a recurrence. Luckily, most of the time, reality is not as bad as our fears, but we become worry warriors."


It's essentially watching and waiting for a lifetime, isn't it?  Those same little fears, aches, bumps, worries, they diminish over time, but never really go away.

The question is, what do you with all of them? What do you change? How do you deal?

Betsy has her own answers, which you can read about in the column. I'm still figuring out my own. I'll try to give you an update on January 15.

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Like Betsy, my cancerversary is preceded by a check-up. Not a scan, just a check-up. I see Dr. R on Monday. I'm not anticipating anything newsworthy. But I'll give a report on Monday afternoon or evening, so feel free to check back.

The Year in Lymphoma

I resisted doing any kind of "year end list" this year -- either a list of my own or linking to a list of someone else's -- because I saw someone say on Twitter that he'd kill a bunny for every year-end list he saw on a blog.

But I couldn't resist linking to this one: it's the "Musings on Progress Against Lymphoma" written by Karl Schwartz, President of Patients Against Lymphoma, an organization that does a huge amount for Lymphoma Patients, through advocacy and education. They've benefited me in so many ways, directly and indirectly, and Karl is a master at explaining difficult things and putting them into a broader context. So I'm happy to share a link to his look back at 2011 and look ahead to 2012.

Karl discusses a number of treatment breakthroughs and milestones that took place last year. I'm kind of proud of myself for having discussed a bunch of these myself in Lympho Bob -- I have great respect for Karl and PAL, and it's nice to know that I can see the same significance that they have seen. Among Karl's significant picks for the year:

• "Bendamustine-R is supplanting R-CHOP as initial primary therapy for the indolent lymphomas." Significant for me, especially, since at the moment, this seems to be Dr. R's choice for treatment if/when I need it again (not that I anticipate needing it in the foreseeable future). There's still nothing close to a consensus among practioners for preferred first-line treatment for Follicular NHL, but B-R is certainly getting a lot of attention lately.
• Rituxan-as-needed showing the same results as Rituxan Maintenance. As Karl says, "The findings of this CER study (about 12 years after the approval of the drug!) should substantially reduce the cost of health care (an increasing concern in our times) while decreasing the amount of treatment we are exposed to in order to achieve the same result.  Importantly, using less Rituxan may also reduce the incidence of infections, which can impair our quality of life of course … and is also expensive to treat." No additional comment from me, other than to point out that I'm on the Rituxan-as-needed train....
• Finally, "Meanwhile, the place of radioimmunotherapy (RIT) remains uncertain." As Karl points out (and as I have reported over the last 4 years), RIT is effective but underused for a number of reasons. But Zevalin keeps chugging along, chipping away at the resistance that doctors and insurers have displayed.

I also agree with many of the items on his Wish List for 2012: encouraging patients to participate in clinical trials; hoping for some quick and intense testing of new treatments; and greater understanding of how lymphoma works, patient by patient, so treatments can be individualized. I'll let you read his full list.

So, thank you Karl for all of your fine work. When I encounter a new Lymphoma patient, I send them to PAL first. It really is the best site I know of for basic and advanced information about our disease.

As a nonprofit, PAL accepts donations. Feel free to give to help them continue their mission. (They were one of the organizations that I suggested people donate to in lieu of giving me money on Pay A Blogger Day last year.)

(By the way, thanks to everyone who paid me on that day.)

(Yeah, that was sarcasm...)

Coast Soap

This morning, as I was picking up some manly-smelling soap for my 14 year old, I caught sight of something I hadn't seen in a long time in my grocery store: Coast Soap.

As I lamented in Lympho Bob, way back in March 2009, the Dial Corp stopped making my favorite soap, the classic, original Coast, replacing it with something called "Coast Pacific Force" -- definitely not the eye-opening scent that I had enjoyed for so long. Even worse, they just stopped selling it anywhere near me (within 100 miles of me, according to their web site at the time). I had to rely on a sister-in-law, and on my mom, to keep me supplied with the new stuff, even if it wasn't as good as the original scent.

I wasn't alone in being so upset. Missy Ward, in a now classic YouTube video and blog post, expressed her disappointment in the changes to Coast's scent. [Obligatory cancer connection: Missy Ward raises funds for breast cancer research.]  This was followed up by Moe Picante's video rant  (be warned -- he's passionate, and he swears a lot) about the new Coast soap. There's a Facebook page called Bring Back Coast Original Soap. Clearly, I'm not the only sicko who misses The Eye-Opener.

So when I looked at the package in the grocery store this morning, I was even more thrilled than I was by its mere presence. It said, "Throwback -- Celebrating 35 years!" I mean, there's even an exclamation point! How much more exciting could this get!?"

But something...seemed...wrong....

I didn't buy the soap. I figured it would still be there the next time I was there, and I still have about 40 bars of Pacific Force from the last time my mother cleared out a store shelf for me.

Instead, I went home and did some research.

It turns out that the only thing that is "thrown back" is the packaging. It's not the old, original scent Coast. It's just the same, new Pacific Force scent, in 35 year old packaging.

That's sad. And I'm upset about it (though not as upset as this guy who is filing a false advertising claim against them).

I appreciate my grocery store carrying the new stuff, because it's still better than the alternatives. But that doesn't mean I'm happy.

The War on Cancer

Happy 2012.

I thought I'd start the new year by looking back -- it's been a little over 40 years since then President Nixon declared a "war on cancer," on December 23, 1971, increasing funding for research and bringing cancer into the national consciousness. It's been a heck of a fight, and while the war isn't over, we've clearly won some battles.

December 23's edition of "Science Friday," the NPR radio show, looked at the War on Cancer. (You can listen to the broadcast, or read a transcript, at this link.)

The guest on the show was Dr. Harold Varmus, currently the director of the National Cancer Institute, and winner of the 1989 Nobel Prize in Physiology or Medicine for his cancer research, which showed how normal genes are transformed by carcinogens and thus cause cancer. In the broadcast, Dr. Varmus addresses a bunch of issues in cancer research that show how things have changed in the last 40 years.


For instance, Varmus discusses personalization, and the trend toward treating each patient's cancer as unique. He also expresses some excitement at attempts to use the body's immune system to fight off cancer, something that researchers were't very excited about until recently. He discusses this particularly in terms of the use of antibodies, which are the body's natural defense against invaders, and the success that researchers have had in using them. (He doesn't mention Rituxan specifically, but it fits into that discussion.) He mentions the treatment Ipilimumab, which messes with the body's suppression mechanism, allowing it to fight off cancer on its own. This treatment has been successful in about 30% of patients with melanoma.

He also discusses some other cutting-edge issues, like genome mapping and micro-environment studies, things that I've been reading a lot about and trying to report here.

Overall, it's a nice broadcast, touching on a number of current issues. But mostly it's a nice reminder of how far we've come in the last 40 years. My guess is that we'll make even more progress more quickly than we have since Nixon was president.

That's my wish for the new year, anyway.

Happy New Year

It's the last day of the year, and I was going to avoid being all introspective and reflective (that will come in a couple of weeks), but then I saw this post written a couple of days ago from the blog CrazySexyLife. The blog is written by Kris Carr, author of a number of books under the "CrazySexyCancer" label, though the post itself is written by Dr. Lissa Rankin.

The post is called "10 Things I Learned from People Who Survived Cancer," and it's a nice way to end the year, I think. It's not too long a piece, so even though you have the link above, I'm going to reprint it here:

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When I interviewed women who had survived breast cancer for my art project The Woman Inside, I noticed that they all had one remarkable thing in common.

They had all faced down death and decided to live every day like it might be their last. And then they all beat cancer.

The more interviews I did, the more I noticed that these women were living differently than most of the people I knew who had not been diagnosed with cancer. Here’s what I learned from those survivor women. Learning these lessons changed my life, and I hope they’ll change yours.

1. Be unapologetically YOU. People who survive cancer get feisty. They walk around bald in shopping malls and roll their eyes if people look at them funny. They say what they think. They laugh often. They don’t make excuses. They wear purple muumuus when they want to.

2. Don’t take shit from people. People who survive cancer stop trying to please everybody. They give up caring what everybody else thinks. If you might die in a year anyway (and every single one of us could), who gives a flip if your great aunt Gertrude is going to cut you out of her will unless you kiss her ass?

3. Learn to say no. People with cancer say no when they don’t feel like going to the gala. They avoid gatherings when they’d prefer to be alone. They don’t let themselves get pressured into doing things they really don’t want to do.

4. Get angry. Then get over it. People who survive cancer get in your face. They question you. They feel their anger. They refuse to be doormats. They demand respect. They feel it. Then they forgive. They let go. They surrender. They don’t stay pissed. They release resentment.

5. Don’t obsess about beauty. People who survive cancer no longer worry about whether they have perfect hair, whether their makeup looks spotless, or whether their boobs are perky enough. They’re happy just to have boobs (if they still do). They’re happy to be alive in their skin, even if it’s wrinkled.

6. Do it now. Stop deferring happiness. People who survive cancer realize that you can’t wait until you kick the bucket to do what you’re dying to do. Quit that soul-sucking job now. Leave that deadbeat husband. Prioritize joy. They live like they mean it.

7. Say “I love you” often. People who survive cancer leave no words left unspoken. You never know when your time is up. Don’t risk having someone you love not know it.

8. Take care of your body. People who survive cancer have a whole new appreciation for health. Those who haven’t been there may take it for granted. So stop smoking. Eat healthy. Drink in moderation. Maintain a healthy weight. Avoid putting toxic poisons in your God pod. Get enough sleep.

9. Prioritize freedom. People who survive cancer know that being a workaholic isn’t the answer. Money can’t buy health. Security doesn’t matter if you’re six feet under. Sixteen hours a day of being a stress monster is only going to make you sick. As Tim Ferriss writes in “The 4-Hour Workweek,” “Gold is getting old. The New Rich are those who abandon the deferred-life plan and create luxury lifestyles in the present using the currency of the New Rich: time and mobility.”

10. Take risks. People who survive cancer have faced their fear and told it to go to hell. They know life is for living. Fear is powerless. And joy lies in taking risks. So go skydiving if you want. Bungee jump. Hang glide. Spend your savings. Live like you might die tomorrow.

Are you doing these things? Or are you waiting for cancer to test out how much you want to live?

Don’t wait for cancer, my love. Don’t tempt the universe that way.

Be brave enough to live now.

For more on how to optimize your life, visit owningpink.com.

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I like to think I do a lot of these things already (though that whole "taking care of your body" thing needs work -- that's a New Year's Resolution, I guess), but mostly it's a nice reminder for all of us, cancer patients and non-patients alike -- to live life with a purpose.

I hope you had a good 2011, and I hope your 2012 is even better, happier, healthier, and more purposeful. And if you suspect it might not be, start thinking now about how you might change that.

ASH Wrap-Up

This isn't anything new -- just a kind of wrap-up of some of the significant stuff from the ASH conference earlier this month. The link features a video interview between two Lymphoma Rock Stars, Dr. Bruce Cheson, head of Hematology at Georgetown University Hospital, and Dr. John Leonard from Weil Cornell Medical College in New York.

Cheson and Leonard discuss some of the significant trends to come out of the ASH conference this year. Two of their discussions are relevant for Follicular NHL, and I discussed both of them earlier this month. The first has to do with Rituxan, and the role of Rituxan Maintenance. The significant study to come out of ASH questioned the necessity for Maintenance therapy (giving Rituxan every 6 months for two years after treatment), suggesting that a treat-as-necessary strategy would yield similar results, but without the expense, time, and discomfort of receiving it every six months.

The second significant trend that they point out has to do with the "love fest" surrounding GA-101, a monoclonal antibody that could be a replacement for Rituxan. I found this to be the more interesting of the discussions, given how the two doctors probe the ASH presentations. They question how comparable the GA-101 studies are to earlier Rituxan studies: they express some reservations about how successful the studies really were; but they also do point out that GA-101 holds some promise (and that it is one of about 10 anti-CD20 antibodies currently in development, which is good news if we're looking to improve on Rituxan).

Chasen and Leonard also discuss trends in research in some other lymphomas, but obviously, it's these two that stand out for me.

The link also has a written transcript of the video (which I read much quicker than the 15 minutes the video would have taken).

I think this pretty much wraps up this year's ASH conference. It was nice to see some of my own assessments backed up, at least in part, by these two men.