Thursday, November 15, 2018

New Oncologist!

I finally have a new oncologist. And if you saw that exclamation point in the title and guessed that I was happy about it, you would be correct.

Let me remind you about the strange and sad saga of trying to find an oncologist.

When I was first diagnosed, I was assigned to Dr. R. I was very fond of him. He was young, which I liked -- I think younger doctors are more sympathetic because they haven't had time to push their emotions away yet. He and I got along great. He was smart and up-to-date, and we talked about family and baseball and living in Boston. He guided me through watching and waiting, and again through treatment with Rituxan.

And then he left me. After about 6 years as my oncologist, he moved to a warmer climate to teach in a medical school. (I'm sure he's doing great in that job.)

I took the opportunity to switch offices. The research hospital near me has a bunch of satellite offices. I had been going to one about 30  minutes away to see Dr. R. There's another 10 minutes away from home, and I decided to go to that one instead.

My new oncologist was Dr. K. He is without question the worst doctor I've ever had. He didn't listen. He told me at the first appointment that he had Follicular Lymphoma patients who just wanted to come in every 6  months and then not think about it. I told him I was not that kind of patient, and that I spent a lot of time learning about my disease. He didn't listen. He gave me lectures about stuff I learned when I was 12 and when I tried to tell him I understood all of that (kindly, of course), he just talked over me.

The worst thing, though, was when he told me I needed a PET scan. When I asked why, he told me that blood work and the exam were fine, and everything looked normal. I asked why I needed a PET, then, since there was apparently no reason for one, and I was young and didn't need the radiation. He couldn't give me an answer, but he insisted on a PET.

I didn't schedule the PET, and I started looking for a new oncologist. Before I found one, I got a letter saying Dr K was retiring. I was happy about that. He seemed to me like he had given up.

I was assigned to Dr. V. And he was awesome. He did one day a week at the satellite office, and the rest of his time at the main hospital, teaching in the medical school and supervising clinical trials. At my first appointment, I asked him what excited him about lymphoma research. He went on for 20 minutes, talking about new treatments and trials he was involved in. I was smitten.

And then, the next time I saw him, he told me that he was leaving for his dream job at a a major cancer center and was leaving in a few months.

I was sad again.

I really loved seeing a lymphoma specialist, and I called the main hospital to try to get in with one. For some reason, I could not get the office to understand what I wanted. I got so frustrated that when they transferred my call back to the satellite office, I just accepted the appointment they gave me. It was a bad day.

The new oncologist turned out to be OK. He was a generalist, not a specialist. But a friend with multiple myeloma (another incurable blood cancer) was seeing this same oncologist, Dr. F, and liked him. So I was willing to give him a chance.

Five minutes into my first appointment with Dr. F, he told me he was retiring.

I would need a new oncologist. If you weren't keeping count, that would mean 5 oncologists in 4 years.


I decided that this time, I wasn't going to mess around. Last week, I called the main hospital's hematology department and explained my situation. They told me they would need a referral from the satellite office. Don't know why -- it's the same hospital. But that's what they needed. they said it could take a few days.

I got a phone message Friday from Doris, and couldn't call back until Tuesday. Then I spent about 30 minutes explaining what I needed -- my onc had retired and wanted to see a specialist. They looked up my records and told me that, since I had already seen one of the doctors there, I would need to keep seeing him.

Who did they want me to see?

Why, Dr. K.

Yes, the one who wanted me to get a PET scan that I didn't need. The one who was supposed to have been retired.

I politely told them that I really would rather not see Dr. K.

After a little more wrangling (they hung up on me once and then transferred me to the satellite office again), I mentioned Doris' name. I think they were happy to have an excuse to get rid of me, because they told me Doris would call me back.

I waited two days, and no call.

So this morning, I called and asked for Doris.

They put me on hold for a few minutes until Doris was free. I could feel my blood pressure rising as I got ready for a fight. But when Doris came on, she was great. She said she had received the referral from the satellite office, and she would find an open appointment with a hematologist. She put me on hold for a minute, and then came back with a date, and an oncologist, Dr. H. I looked at my calendar.

"Yes, that date sound great," I said. "What time is the appointment?.....Hello?......Hello?" [click.]

They had cut me off again.

I called back right away, and they put me on hold again until Doris was free. I took the time to look up Dr. H on their website.

What I read got me very excited. He's young. He's a hematology specialist. He teaches in the medical school. He does research on quality of life issues.

And here's the best part, given that they wanted me to see Dr. K again. Dr. H does research that shows that PET scans are often ordered when they aren't necessary.

Doris came back and we finalized the appointment. I'll see him in about three weeks.

Now, I know there's a chance he won't be perfect. And I know that, given my track record, there's a chance that I'll see him once and then he'll leave for a new job.

But I feel good about things. He seems like he has the qualities and experience that are important to me. I'll find out for sure in a few weeks.

More importantly, I feel good for being persistent and making sure I got what I wanted. Some days, I get beaten down easily and accept things that I shouldn't.

This was the best cancer-related news I have gotten in months. It was a lift I really needed.

I'll let you know how things go.

Tuesday, November 13, 2018

Update and New Writing

Ugh. I'm still catching up on things -- no time to even look at the ASH abstracts.

A few things to share, though.

1) I'm still in the process of finding a new oncologist. It's been a nightmare. I hope to have everything fixed by tomorrow, with a new oncologist that I'm happy with, and a long story to tell you. I'm going for a sad tale with a happy ending. Wish me luck that it actually turns out that way.

2) I had a piece published in Lymphoma News Today a couple of weeks ago that I haven't shared yet. It's called "I Find Hope in Cancer-Themed Humor." This has always been true for me. I think it's a blessing that I can see the absurdity in life and not be sad about it. And goodness knows there is plenty of absurdity in the life of a cancer patient.

3) I also had a piece published yesterday on It's called "Follicular Lymphoma: Strange Guilt." I have long talked about the importance of emotions in our lives as FL patients. For me, one of those emotions has been Guilt. I've learned to deal with it, but it's still kind of there all the time.

I'm hoping life will ease up a bit soon, and I can get back to the blog. Lots of good stuff to write about -- no time to do it.

More soon. Come back.

Wednesday, November 7, 2018

Anti-CD47 Treatment for FL

The New England Journal of Medicine just published the article "CD47 Blockade by Hu5F9-G4 and Rituximab in Non-Hodgkin’s Lymphoma." It describes research that people are very excited about, and that could provide a new path for treating Follicular Lymphoma.

Some background first. The article describes a type of immunotherapy. There are lots of immunotherapy treatments out there already and in development, but they all involve getting the immune system to attack cancer cells. The immune system's job is to defend against outside invaders (like bacteria and viruses). That doesn't help against cancer cells. They aren't outsiders -- they are parts of our body that went from normal to abnormal. 

Immunotherapy treatments work in one of two general ways -- either change the cancer cells to make them look like outsiders that the immune system knows to attack, or change immune cells to recognize the cancer cells as something that should be attacked and defended against.

For a treatment like CAR-T, the immune cells are changed.

In the treatment described in this article, it's the cancer cells that are changed.

The article describes a treatment called Hu5F9-G4. (You can tell this is a really early trial because the treatment doesn't have a cool name with a Z or an X in it yet.)

Hu5F9-G4 works by targeting the protein CD47, which sits on the surface of some cancer cells. CD47 is important because, as the descriptions of the research say, it gives a "don't eat me" signal to immune cells. But Hu5F9-G4 blocks that signal, so the cancer cells are vulnerable. When that happens, an immune cell called a macrophage can recognize it as an invader. The word "macrophage" comes from the Greek words "makros" and "phagein," which together mean "Big Eater." Macrophages eat the invaders.

[How did I do there, Ioannis? Is my Greek pretty good?]

This treatment also included Rituxan, which targets a different protein, CD20. So between the two agents, you have twice the chances of getting to the cancer cells.

Now, the article describes results from a phase 1b/2 clinical trial. A phase 1 trial will basically figure out how much of a treatment to give, and the phase 2 trial will give the treatment to a particular group that might benefit from it. Both phases usually involve a pretty small group of patients. 

For this trial, there were just 22 patients, 15 with Diffuse Large B Cell Lymphoma, and 7 with Follicular Lymphoma. All of them were heavily pre-treated -- they had tried at least 2 other treatments, and as many as 10 treatments. And almost all of them were refractory to Rituxan (meaning it had stopped working).

And the results were good. 50% of patients had a response, with 36% of them having a Complete Response. The FL results were especially good, with 71% Overall Response and 43% Complete Response. After 8 months, 91% of the responses were still holding.

People are excited about this for a couple of reasons. First, getting macrophages involved is new -- it's a different type of immune cell that might be used to attack cancer. Second, it seems to work for some patients who aren't able to use Rituxan anymore. 

But there are certainly some questions, too. It's a very small trial, as phases 1 and 2 trials tend to be. The treatment needs to be tested on a larger group of patients before we can get ourselves too excited.

But if nothing else, this is another path for researchers to follow. There are a bunch of anti-CD47 presentations at ASH this year, for lots of different blood cancer. That's promising.

Certainly another one to keep an eye on. 

(And more on ASH coming soon.)

Saturday, November 3, 2018

ASH Abstracts

Ten days. I think this is the longest I've gone between blog posts since I started writing it.

Unfortunately, it's because my Dad died last week. He was diagnosed with lung cancer over the summer, and he'd been in hospice care for about 5 weeks. (Everyone wants to know if he smoked, and he did, but he quit over 25 years ago when his first grandchild was born.)

So the last 10 days or so have been taken up by family obligations, making up work that I've missed, and then just not really feeling like writing about cancer.

The good news (and you know I'm all about good news) is that the ASH abstracts came out on Wednesday.

ASH is the American Society of Hematology, the major organization for doctors who specialize in blood diseases, including lymphoma.

The abstracts are the short descriptions of the different sessions for their conference, which will be held at the beginning of December. Doctors who will go to the conference can read the short summaries and then decide which lectures or presentations to attend.

Every year at this time, I like to go through the abstracts for Follicular Lymphoma (there are 249 of them this year) and write about the ones that look interesting to me.

From what I can tell, there aren't really any big "blockbuster" presentations about FL this year, though I could be missing something. There will be some chatter in the next few weeks about ASH, and I'll keep an eye out for anything that people seem to be excited about. I'll also look out for the ones that won't get as much attention, but that I think are important, like research about Quality of Life and how drinking scotch will help you if you have FL.

(I didn't think there would really be anything about the benefits of scotch being presented at ASH, but I searched for it anyway. Nothing. And nothing for bourbon, either.)

So I'll pass along any interesting new research that I come across in the next couple of weeks.

(And thanks to Shelly, for checking in on me when I hadn't posted in a week, to make sure I was OK.)

Wednesday, October 24, 2018

No Chemotherapy Required?

Rituxan instead of chemotherapy?

The Journal of Clinical Oncology published the results of long-term trials from the Nordic Lymphoma Group. They showed that, over 10 years, a group of Follicular Lymphoma patients had excellent Overall Survival, even without chemotherapy.

If you've been following the blog, you know that this means a lot to me, because I'm one of those FL patients who has had great results over a long time (over 8 years) with just Rituxan.

The article is called "Chemotherapy-Free Initial Treatment of Advanced Indolent Lymphoma Has Durable Effect With Low Toxicity: Results From Two Nordic Lymphoma Group Trials With More Than 10 Years of Follow-Up."

The study looked at 321 patients with indolent lymphoma (84% of them had Follicular Lymphoma). The patients were symptomatic and had a high tumor burden. All of them received one or two cycles of four weekly infusions of Rituxan. About half of them also received Interferon (another biological agent -- not a chemotherapy -- that is more common in Europe than the U.S., from what I can tell).

Patients were followed for a median of 10.6 years. At the 10 year follow up, 73% of patients were alive. 36% of them (38% of FL patients) never needed chemotherapy. For patients who needed treatment within 24 months, the 10 year survival rate was 59% (81% for patients who didn't need treatment that soon).

Those 10 year numbers are important, because they are about the same as studies of patients who have immunochemotherapy (Rituxan + chemo, like R-CHOP) as their first treatment.

As the researchers state in their conclusion, the study would suggest that many FL patients can hold off on chemotherapy and try Rituxan instead, and that for some, Rituxan can be enough.

Now, let's be clear -- the study is not saying that we are finished with chemo. Many patients in the study ended up needing treatment (including chemo) at a later time. The study suggests that for many patients, starting out with just Rituxan can be an option.

What makes the study important, in my non-expert opinion, is that it shows once again that it's possible to move away from chemo, and that the impulse to start with chemo might be challenged.

Of course, as someone who watched and waited for two years, and then took only Rituxan, and who hasn't needed treatment in over 8 years, I also like reading that my choice is kind of validated. It looks back at the past -- the fact that I'm still here is the thing that validates the choice -- but it's still nice to read.

Now, the most important lesson here -- talk to your doctor. Rituxan worked as an option for a particular set of patients in a specific study. It could work for some people. But traditional chemotherapy might be the best option for others. Talking things through with your doctor, asking informed questions, and perhaps seeking a second opinion are your best approaches to deciding on treatment.

Saturday, October 20, 2018

What Paul Allen Should Remind Us Of

There's been a lot written online over the past few days about Paul Allen, who co-founded Microsoft and then went on to become a philanthropist and owner and funder of many other businesses. By all accounts, he was a good guy. He died on Monday.

More importantly for anyone reading this blog, he was a Non-Hodgkin's Lymphoma patient. The announcements about his death (and most of the stories about him since) say that he died "from complications of Non-Hodgkin's Lymphoma."

He had been diagnosed, and was successfully treated, for Hodgkin's Lymphoma many years ago, and then was diagnosed with NHL in 2009, and again had successful treatment. It was only recently that he announced that the NHL had come back.

It's very sad news, and I very rarely write about people dying. I'm not in denial about it. But I also think it's better to focus on what we can do when we're still alive.

But in this case, I'm less interested in Mr. Allen than in the way people are talking about him, especially about his disease.

First of all, let's get this out of the way -- the only mention I have seen about the specific subtype of NHL that he had is that he was diagnosed with Diffuse Large B cell Lymphoma in 2009. I'm not 100% sure that's correct, but it's what I've seen. The official announcement of his death only mentioned NHL, not a subtype.

And, of course, every one of the dozens of stories that report on it also have to go with the information they have received -- that it was Non-Hodgkin's Lymphoma.

To me, that's what makes a bad situation worse. At least for NHL patients.

When we do get the bad news that someone has died of a disease that is connected to us in some way, our ears perk up even more. Old feelings return. Any worries we might have tucked away come back.

And if we read articles about someone famous with NHL, we get distorted information.

Like this article from CBS News called "Paul Allen's Death Shines Light on Non-Hodgkin Lymphoma." We get to read statistics about how many people are diagnosed with NHL every year, and about famous people who died from it. And while the article does point out that there are lots of different types, some slow-growing and some fast-growing, we still get an survival rate that lumps them all together.

That article title is ironic. It doesn't shed much light at all, certainly not to NHL patients. And whatever light it does shed, it just creates a bunch of shadows that hide information that might actually be useful.

The fact is, there is no "Non-Hodgkin's Lymphoma." There's no single disease that is called that. there are at least 60 different subtypes, and they can be incredibly different from one another. There's not much light being shed.

Now, part of the issue is that the official announcements about Paul Allen's death mentioned NHL, but not DLBCL. His family may have had a very good reason for not getting into more detail about his disease. And I respect that. They have other things on their minds right now.

But the only thing, for me, that's getting some light shed on it is the fact that there is still a lot of work to do when it comes to awareness. Anyone reading this probably already knows their subtype, and is working to learn more about their disease. That's good.

Now do what you can to educate others. Especially other patients. It doesn't matter so much if the general public knows the difference between DLBCL and FL. But a newly-diagnosed patient needs to know. Someone affected by FL needs to know that a statistic in a news story doesn't necessarily apply to them in the way it applied to Paul Allen.

Do your part to shed some light. Help others truly understand your disease.

And more importantly, try not to panic when you read statistics. Remind yourself that other people are not you, and statistics don't represent you. Focus on what you can do today to live your life well, and then do it.

Tuesday, October 16, 2018

Cancer, Community, and Buffalo Chicken

My latest on

Cancer, Community, and Buffalo Chicken.

I've been thinking more and more lately about community, and the need to be with people who understand what I've been through.

There's something very satisfying about someone talking about an experience, and getting the feeling that you've been there yourself.

A few months ago, I went to the HealtheVoices conference in Chicago. I wrote about this -- how great it was to meet other online cancer advocates and feel that kind of connection.

I didn't write about a session on the closing day, when a breast cancer advocate talked about having to tell her kids that she had cancer. I relived everything. It was one of the hardest things I've ever done. When the session was over, I stopped her as she was leaving (three days and it was my first time getting a chance to speak to her -- she's very popular).

I introduced myself and said, "The stuff you said about telling your kids really hit a nerve."

"I'm so sorry!" she said.

"No no. Don't be sorry. It was a good thing. Really."

And it really was. As hard as it was to tell my kids, and as hard as it was to relive it right there, it was good to make that connection with someone else.

Is that weird?

Yes, a little, in a "misery loves company" kind of way.

But it also reminds me of how important it is to be a part of a community, especially one made up of other Follicular Lymphoma patients, or at least other cancer patients. People who know what you've been through.

And if that's not possible, then people who support you, even if they don't understand it completely.