Sunday, July 15, 2018

It's OK to Have a Bad Day

I'm generally a positive person. I definitely have more good days than bad days.

But bad days happen for all of us.
 I'm sure you've had the same experience that I have -- people telling you to how important it is to stay positive. For me, it's usually not a problem to take that advice.
The problem comes when we feel like we're letting other people down when we have those bad days.

I wrote another piece for called "It's OK to Have a Bad Day."

One more thing -- I've been paying a lot more attention to mental health these days. We all should. A bad day is OK, but it's important to recognize when a bad day is something more, and it's time to find some help.

Read more in the piece. I hope you like it.

Thursday, July 12, 2018

Vote for My Blog

I am pleased to announce that, once again this year, I have been nominated for two WEGO Health Awards.

The awards are given in 16 categories, and are meant to recognize "exceptional patient advocates, influencers and experts who make a difference in the lives of patients and caregivers." Last year, I was nominated for Best in Show: Blog and Best Kept Secret.

This year, I am nominated for Best in Show: Blog (again) and Patient Leader Hero. (You can read descriptions of all the awards here.)

The awards are now in the "Endorsement" phase, and this is when you can vote for me.

After the nominations are made, anyone can "endorse" (vote for) any of the nominees they would like. You can endorse more than one nominee in a category, and you can endorse any nominee in multiple categories, but you can only endorse once. Endorsements close on August 17.

In each category, the top 3 vote-getters (those with the most endorsements) become finalists for that category. A panel of judges will look at the rest of the nominees and choose two more to go into the finals. A separate panel of judges will then pick a winner for each category from those 5 finalists.

You can endorse me by clicking on one or both of the badges below. (They also appear to the right, where they will stay until August 17.) You will be asked to enter an email address and a name (to make sure you are only voting for each nominee one time).

Now, it's a big contest, so there are a couple of hundred people nominated in each category -- lots of competition. I wasn't a finalist last year, and that was just fine. It really was very cool just to be nominated. I've met a bunch of the other nominees, and they do some really amazing work for their communities. I'm pleased to be even nominated in the same awards contest with them.

That said, as cool as it was to be nominated, it would be even cooler to be a finalist -- I'm not going to lie.

So consider given me an endorsement or two.

And thank you for being such great readers.

Monday, July 9, 2018

Keto Diet and Lymphoma Treatment

Fascinating news last week: a clinical trial will start soon that will examine the effect of diet on a specific lymphoma treatment.

Two things worth paying attention to here.

First, the study itself: Lymphoma patients will be given Copanlisib (also known as Aliqopa), a PI3K inhibitor. (Copanlisib is approved for relapsed Follicular Lymphoma, though I don't know which types of Lymphoma will be involved in the study.) PI3Ks work by effecting how a cell (like a cancer cell) takes in glucose, the sugar that a cancer cell needs to grow. Interrupt the food supply, and you mess with the cancer's survival.

However, researchers have known for a long time that the body's natural reaction, creating insulin, can mess with the effectiveness of the PI3K inhibitor. So, this study will look at whether or not a ketogenic diet will increase the effectiveness of the inhibitor. A Keto diet (as it is known) involves eating high percentages of fat and low percentages of carbohydrates (which can raise blood glucose levels). So a keto diet, taken while a patient is on the PI3K inhibitor, might help make it more effective. A study on mice shows that this is a possibility.

That in itself is pretty fascinating to me.

But there's a second thing that's worth paying attention to.

I saw this posted on a couple of different places online, and the immediate reaction to it from some lymphoma patients was to announce that they were going to start following the keto diet.

Slow down.

The research is not about whether the keto diet will help your cancer. It's about whether the diet will help make a specific type of cancer treatment more effective.

In fact, following the diet could do the opposite, and harm you. From another article on this research: The researchers say "they would discourage patients from putting themselves on diets after reading about the latest findings. There is no evidence that the ketogenic diet, for instance, would be helpful on its own – in fact, for leukaemia it appeared to accelerate the disease’s progress."

Let's make that really clear: for one type of blood cancer, the keto diet doesn't help, it actually make the cancer become more aggressive.

It's so important to read carefully.

I've been dealing with FL for over 10 years, so I get the impulse to look for easy answers -- eat this, not that, and your deadly disease will go away.

And I get the impulse to believe it when you heard that a friend of a friend did just that -- ate the goji berries, did yoga every day, bounced on a trampoline, visualized the tumors getting smaller, whatever -- but without rigorous studies of those things, under controlled conditions, none of it means anything. [And those are all things that people advised me to do to cure my cancer.]

I'm not saying diet or exercise isn't important, or that the keto diet doesn't work (I have a friend who is diabetic who swears by it). I am saying that until I get some legitimate scientific answers, I'm not going to entrust my life with it.

And this study is part of a larger series of studies that will focus on "rethinking human diets for cancer." That's great -- we need strong, evidence-based studies that will give us a real sense of how elements of our diets might effect us as patients.

I look forward to seeing how this trial plays out -- it looks like it will start up in October. I'll post any new info I see. I'm all for supporting clinical trials for Lymphoma, but even more, I'm all for supporting trials that might help us slow down and think more carefully about things like diet that might hurt us as much as we wish they could help us.

Thursday, July 5, 2018

A New Way To Think About Cancer

I want to pass along a link to you -- an article called "Time for a New Cancer Paradigm," by Terrilyn McCormick.

Terrilyn is a Follicular Lymphoma patient and a writer. Her piece talks about the reactions people usually have when they find out she has cancer -- some give the horror stories, others give the hopeful stories. But Terrilyn, like many of us, are somewhere in the middle -- living with cancer but not needing treatment, looking at it like a chronic disease that may never go away completely, but which we can live with.

If you know people who can't quite deal with that, I suggest you post a link to Terrilyn's article on your Facebook page or send it in an email to your contacts. It might help explain your strange reality to people who don't quite get it, and give them something to think about.

Sunday, July 1, 2018

Watching and Waiting: What I've Learned

Sometimes I forget that new readers come along all the time, and they haven't heard my story. I don't like to repeat myself too much, but I do try to write about some of those experiences, especially my early experiences, when I can.

One thing I haven't written about in a while is Watching and Waiting -- the decision to hold off on treatment until it is physically necessary. I watched and waited for two years (to the day) after I was diagnosed. Some nodes in my left hip got large and they made my leg swell up. I had six rounds of Rituxan, and I haven't needed treatment since (in over 8 years).

Those two years of watching and waiting weren't always easy. I remember, right after I was diagnosed, while we were still doing all of the tests, seeing something online about watching and waiting. I think I read the first paragraph and didn't bother with the rest -- who in their right mind would get a cancer diagnosis and then not do anything about it?

Well, me, I guess. And probably lots of you. It's not an easy decision to make, and it takes a while to be at peace with it. For me, it was worth it. I was able to hold off on treatment, and I have lots of options available to me when I need them -- including a bunch of new ones that weren't around when I was first diagnosed. My Quality of Life has remained good for all of that time. I'm happy I amde the decision I did.

But, as I said, it's not an easy decision.

I just wrote a piece for Blood-Cancer.come called "6 Things I Have Learned About Watchful Waiting," and I invite you to take a look. It focuses on the kinds of emotional juggling that watch-and-waiters have to do while they are observing their disease and considering their options.

The decision is hard, and what comes after it can be even harder. Of the things I learned, the one about talking might be most important. It's not something you can really do alone. For me, talking to loved ones helped, but joining an support group helped most. It was great to hear from people who had been through the process.

So if you're watching and waiting, or you've just been diagnosed, and you're considering the decision, I wish you lots of luck, and a peaceful mind.

Remember it helps to talk. And I'm happy to listen.

Thursday, June 28, 2018

Interview with Dr. John Leonard

Patient Power has a new video interview with Dr. John Leonard from Weill Cornell Medicine. Dr. Leonard is asked about important Lymphoma research reported at ASCO and the European Hematology Association's annual meeting. It's about 20 minutes long, and worth the time.

Some highlights (in my opinion):

The big news in Follicular Lymphoma research these days is the RELEVANCE study, which looked at how R-Squared (Rituxan plus Lenalidomide/Revlimid) compared to Rituxan plus chemotherapy.  As Dr. Leonard points out, the trial tried to measure superiority -- in other words, the researchers hoped to show that R-squared was better than R-chemo. In the end it did not, but it did seem to show that R-squared had about the same effectiveness as R-chemo, with different side effects.R-squared seems to be a good alternative to R-chemo. (The Lymphoma community seems hopeful about all of this, though they recognize that the trial did not meet its endpoint.)

What came next is a great example of why I like Patient Power so much. Dr. Leonard was interviewed by Andrew Schorr, Patient Power founder, and a 20+ years survivor of CLL, another slow-growing blood cancer.

Schorr asked about expenses. Chemo is often over and done with after a period of weeks or months. But some newer treatments are taken daily as pills, and over time, they can be more expensive than chemo. Dr. Leonard recognized that it's a major issue. I've heard the phrase "financial toxicity" to describe this -- when researchers give the results of a trial they are required to report on physical toxicity -- the side effects that come with the treatment. But we rarely hear about the financial side effects. I love that Andrew Schorr brought that up.

Schorr also asked about CAR-T, one of the other topics that Lymphoma folks have been excited about lately. Dr. Leonard pointed out that, right now, only acute Lymphomas have seen trial results (though these include aggressive Transformed FL). He thinks they are very helpful for some patients (they have certainly been helpful for Ben and for William's wife -- I've mentioned them before, and you can read about their experiences and more on CAR-T at the CAR-T and Follicular Lymphoma Blog.

Despite their successes, Dr. Leonard tells his patients that about 1/3 of people who take CAR-T have a durable response, lasting more than a year. Another 1/3 have a shorter response, less than a year. And about 1/3 don't have a response. And he also makes clear that there are some potentially serious side effects. And, more importantly, he considers this the "1.0 version" of CAR-T, and thinks it will keep improving as researchers learn more about it.

Schorr then asks Dr. Leonard what he would tell a brand new FL patient if the patient asked if he was hopeful about the future.

Dr. Leonard, I am happy to say, is very hopeful about our future. He has seen outcomes improve over the last few years, and we still haven't seen long-term results for some more recently approved treatments. He expects things will keep getting better for us (and he encourages us to pay attention to clinical trials to see if there are any that might be appropriate for us, and move us all along).

Finally, Schorr asked what kinds of questions a new patients should ask an oncologist. Dr. Leomard has some good advice, including asking about what the goals of the treatment might be.

I encourage you to watch the whole video to see what else he has to say.

Sunday, June 24, 2018

The Oncologist Blues

I had a rough day Friday. I woke up in a bad mood, and it got worse during the day. I'm trying to find an new oncologist, and that search turned out to be a part of my bad day.

My first oncologist, Dr. R, was great. I saw him for about seven years, and we got along very well. We listened to each other. But he moved out of state to teach in a medical school, and the practice assigned me a new one, whose office was closer to my home, so I went with it.

But Dr. K was not great. He wouldn't listen, and when I had questions, he wouldn't give me answers. He ordered a PET scan that he admitted I didn't need, and which I refused to have. I was looking for a new oncologist when he retired.

The practice assigned me Dr. V, who was great. He is a lymphoma researcher, and we talked about some of the the research that got him excited. I enjoyed our visits. And then he was offered his dream job at a major research hospital, and he left.

The last time I saw him was in February. I emailed Dr. R, and asked him for a recommendation for someone new. He recommended Dr. L, and I looked at the website of the hospital where he works (the office I go to is affiliated with the main hospital), and Dr. L looked great. He's a researcher, works with medical students, and he had Dr. R's recommendation.

I held off for a while before I called to make an appointment. My disease has continued to be stable -- Dr. V said I could go a year between visits if I wanted to -- and I wasn't in a rush.

But over the last week or so, I've been thinking a lot about cancer (more than usual, for someone who reads and writes about it every day).  All that thinking made me decide it would be a good time to make an appointment with Dr. L. An appointment this summer would put me in the 4-6 month range that I've kept between appointments, and that I'm comfortable with.

That's when the problem started.

I called Dr. L's office to make an appointment at the research hospital where he sees patients. I was put on hold for a about 10 minutes, and then someone got back to me and said I should call the office near my house, since Dr. L was now seeing patients there once a week.

Perfect. Close to home is always nice. I called and was put on hold again. When someone finally answered, I was told that someone else would call me back. When someone did, 20 minutes later, I was told that I would need to call the main hospital again (the one I had called originally).

OK -- some miscommunication, but that's fine. I called the number I was given, and the person who answered said "Who gave you this number?!" very suspiciously, like we were in a movie. I was put on hold again, and after 10 minutes, I was told that Dr. L doesn't see lymphoma patients (which is not what the hospital website says, or what Dr. R told me). I was transferred back to the other office and offered an appointment with a general oncologist.

My goal is asking Dr. R for a recommendation was to see a lymphoma specialist. I really liked being able to have those kinds of conversations with Dr. V. A general oncologist is fine -- I'm sure I'll get good care -- but my needs are kind of specific at this point.

I took the appointment, though I was extremely frustrated. The whole thing took over an hour, and I was transferred between the two offices three times. I was already having a bad day, and the experience put me in a big funk.

Part of the frustration was with the system, and I don't think that's going to get any better any time soon. No coordination between offices that are supposed to be part of the same hospital system, and apparently out-of-date information on their website.

And part of the frustration is personal. I'm on my fourth oncologist in four years. I'd like one that I can have a relationship with, and at this point, I know just what kind of a relationship I want that to be.

I also know that I might be unrealistic in thinking I can find the perfect oncologist -- and the perfect hospital that he or she might work in. And I know how lucky I am to even have a choice. And part of me says I should stop whining about it all, and that other people have it worse.

But just because other people have horrible experiences, that doesn't mean we as patients should settle for "it could have been worse." Good care should be the standard for everyone.

So, for now, I have an appointment for next month. I'm feeling better today, and I'm still deciding whether or not to take it, or to keep searching for an oncologist that I think I'll be happier with.

Thanks for listening.