The Emotional Side of Cancer

My last couple of posts (one dealing with my most recent Oncologist visit and the other with the idea of PT-CAT scans) have made me think again about the emotional part of Follicular Lymphoma.

As I've mentioned before, and mentioned again in the last post, I feel like Follicular Lymphoma is as much an emotional disease as it is a physical disease. For many of us, FL involves a whole lot of waiting. And watching. And worrying. And wondering. For many of us, we spend more time without physical symptoms than we do with them. But the waiting and the worrying is with us all that time.

The stress, the sleepness nights, the randomly breaking into tears (as I did for a couple of weeks after I was first diagnosed) -- that's all real, and harmful in their own way. Oncologists don't always think about those things. Especially when we're first diagnosed, an oncologist who is familiar with Follicular Lymphoma might be thinking, "This guy has nothing to worry about -- a slow-growing cancer like FL? He could be alive for another 30 years." But we as patients don't have that broad perspective. We're thinking more about what's immediately in front of us -- CANCER, in big, bold letters, and everything that goes along with that word.

I was interviewed recently by someone who was planning a presentation in front of a group of oncologists, and he asked what I thought they should know about Follicular Lymphoma. I said they need to pay more attention to the emotional aspects of the disease.

I don't know if that message ever got to them.

All of this got me thinking about a link that I have had tucked away for a few months. I have linked to the radio show Yale Cancer Center Answers before, and they did a show in December called "Managing the Emotional Side Effects of Cancer." Answers is a weekly radio show, hosted by oncologists from the Yale Cancer Center, featuring an expert in some cancer -related field every week. Sometimes it's an expert in a particular cancer, but sometimes it's someone who has advice for care-givers, or healthy life styles, or something that's not an update about research in a particular type of cancer. The shows are all archived online.

For the December show on Emotion, the guest was Dr. David Sells, a research scientist in Psychology at Yale Medical School. He discussed some of the emotional issues that cancer patients go through, and some ways to deal with them. You can listen to the show here (Scroll down to the December 13, 2015 show), or you can read a transcript of the show here.

There were a few things that stood out for me:

• We all react differently when we get a cancer diagnosis. This was something that was said several times during the show. But something they discussed made me think -- some people identify themselves as cancer patients, and some people as cancer survivors. There can be a real difference between those two ways of looking at yourself. Sometimes being a patient means always having someone else take care of you. Being a survivor means you've already been through a battle and came out the other side. So the way we label ourselves can effect our emotions. 
• What's interesting, though, is that I usually refer to myself as a cancer patient, not a survivor. Anyone who has been diagnosed with cancer and is still alive is a survivor (according to the folks at the National Cancer Survivors Day Foundation). Still, in my experience, people think of "survivor" as "I'm done with treatment and the doctor says I'm OK." I know I'm in this for a long time, probably, so I don't want to get over-confident. I stay with "patient." That doesn't mean I'm dealing with negative emotions because of it. It means I'm still fighting. I label myself any way I want. that's empowerment.
• Another point that Dr. Sales made was on how people deal with the emotions. There are lots of ways -- seeing a therapist, joining a support group, throwing yourself into a hobby, sharing with a trusted friend. For me, it was finding an online support group. there is something very good (which comes up on the radio show) about sharing your feelings with someone who has been through the same thing, or something similar. It helps to know you aren't going crazy when someone else tells you they've been through the same thing and have felt the same way. 
• For me, the support group was wonderful. I met some great people who understood how I was feeling and some who taught me a lot about lymphoma (and still do). I couldn't have done it by myself, and I don't think anyone should try. With Follicular Lymphoma, there's just too much to deal with. we have lots of time to think, and that can be a bad thing if we let it be. I still check in with the support group every day. I don't contribute much anymore, but I like to know what people are talking about, and I learn some new things, and occasionally I get an update from an old friend. It's still a valuable resource.

I don't know if the emotional side of cancer will ever get better, even as newer treatments are being discovered. Maybe some day, even if there's no outright cure, we find something that lets us control it and just turn it into a chronic disease. Maybe then "cancer" won't be CANCER, and we won't have the automatic panic that comes with it now.

Maybe some day the emotion we have to deal with is boredom -- taking a pill every day will just get old, and the cancer walks every year will seem like a chore, and we'll get tired of the ribbons and bracelets.

But for now, it's nice to know that other people feel the same worries that we do, and there are ways of making it all feel just a little bit easier.

Thank you all for listening.



https://medicine.yale.edu/cancer/patient/answers/programs.aspx

The Problems with PET-CT

This is going to be one of those posts where I respond to comments from an earlier post, because just adding another comment won't do the job.

A few days ago, I had a regularly scheduled 5 month (or so) appointment with my oncologist. He mentioned scans -- and why he wouldn't recommend my getting one. I was fine with not getting a scan (my last one was in June 2014). And he was OK with my not getting one.

I mentioned that in the blog, probably not in as careful a way as I should have, that scans aren't always a great idea for Follicular Lymphoma patients. The comments that followed that seems to have stirred up a little bit of concern. That is, of course, the last thing I want to do with a blog post.

So let me talk about scans just a little bit.

As one commenter said, scans for indolent FL are controversial, and there does seem to be more reluctance to use them for those patients. As I said in my comment, and the other commenter also noted, scans involve radiation, and when you're looking at potentially 30 more years of being an FL patient, that's a lot of radiation that builds up over time. And excessive radiation can potentially cause secondary cancers (potentially -- there's no magic formula that says how many scans to have, and how often, to avoid secondary cancers).

So are they necessary? Or even useful? Should you have them at all?

First off, let me make something clear -- when I talk about scans, I mean a combined PET and CT scan. There does seem to be some agreement in oncology that the combination is more useful than just a CT. I sometimes refer to scans as just CT scans, but I really mean a combined PET and CT -- I've never had just a CT for my lymphoma. Without getting too much into it, a CT will show if there is anything abnormal, while a PET will show if there is metabolic activity in that abnormality (if the cells are eating up a lot of the sugar that was in that nasty stuff they made you drink before the scan). Cancer cells tend to eat up more sugar, more quickly, than normal cells.

Lymphomation has some basics on PET scans. They also have a handy chart that lays out when PET-CT scans are used in different types of lymphoma. This is the section on Indolent Lymphomas like Follicular Lymphoma:




First of all, notice the title above the chart -- oncologists don't agree on much.  Most use PET-CT after diagnosis to help stage the lymphoma (remember that staging has to do with how widely it spread through the body). So that makes sense, and "most do" use it then. It helps to have some kind of base line.

The next possibility for when it could be used is "interim treatment response." In other words, if you are scheduled for 6 rounds of a treatment, does it help to know if it's working after 3 rounds by having a scan? That's listed as "investigational." There are some studies trying to figure out if knowing that information is helpful. If it's not working after 3 rounds, do I stop and try something else? Or doe we go the full 6 rounds because sometimes things take longer to work? That needs some investigation.

The next possibility is "post-treatment response." This is also controversial, though most oncologists do it. Again, this makes sense -- after those 6 rounds, we want to see if it worked (whether or not we did a scan after 3 rounds). Compare the post-treatment scan to the initial scan and you can see how well it worked.

Finally, there is "Surveillance" -- just getting a scan to see how things are looking inside, even if there don't seem to be any problems. As the chart says, most don't do this anymore. Unless there's something specific that you're checking on and looking for, if there's no reason for the scan, it's not worth the extra radiation.

So why are some scans "controversial"?

Well, a post from ASCO sums it up -- PET scans aren't any better than clinical exams (blood work or noticing symptoms) in figuring out whether or not to begin treatment. And they come with all of that radiation.

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So what should you do?

I'm afraid I'm not going to give you an answer to that. You and your oncologist should talk about it. A lot. Especially if you have concerns.

I will, though, give you a summary of my experience.

When I was diagnosed, I has a PET-CT as part of my initial staging, along with a biopsy and a bone marrow biopsy. After that flurry of appointments at first, the oncologist said we would look at things again in a month. I assumed he meant I would do another scan in a month. But he didn't. Instead, he saw that I wasn't developing any other symptoms, so over another couple of months, it seemed clear that my FL was taking an indolent course -- nice and slow.

Two years later, I noticed some swelling in my left leg.I was no longer asymptomatic, so it made sense to have a scan then. The scan showed some nodes pushing on things that led to the swelling, and letting that go would have caused lots of problems. So I began treatment (Rituxan).

After 3 rounds of Rituxan, Dr. R gave me a physical exam, and saw that the nodes were less hard, and not as noticeable. He called it a Partial Response, and based on that exam, decided to do a full 6 rounds of Rituxan, since it seemed to be working. So no "Interim Treatment Response" scan -- only clinical exam to figure out there was a response.

After treatment was over, I had a scan, which showed a Partial Response (my biggest 6 cm node went down to 3 cm, or about 2 inches down to 1 inch).

That was in March 2010. I didn't have another scan until June 2014. At every appointment, Dr. R would say, "We can do a scan, but I don't see any reason to." But then, after 4 years, he said, "Let's see what's going on in there," and I agreed, because I was curious. I was feeling well, with no symptoms, but I also knew that Rituxan can keep working for a few months after it has been given. So maybe I had a Complete Response all this time and didn't know it? (It turned out I had not had a CR).

So there was no clinical need for a scan in 2014, but I got one anyway.  I have said many times that Follicular Lymphoma is an emotional disease as much as a physical one, so I would call that one an "emotional scan" -- I just needed to know what was going on inside me. I think I've dealt with the emotional aspects of having an indolent cancer pretty well (blogging helps). But sometimes, even after 6 years of having it (which is where I was in June 2014), a little fear creeps in.

So I was glad I had the scan then, even though it wasn't physically necessary.

This last visit with Dr. K, he mentioned scans again. As he put it, "The Academics are telling us not to do them too often." I know that he uses guidelines from NCCN (National Comprehensive Cancer Network) for a lot of what he does. NCCN is a little vague when it comes to scans for Follicular Lymphoma; it says that you shouldn't do a scan any more often than 6 months, for two years after treatment than resulted in a PR or CR. After two years, no more frequently than once a year.

When I mentioned that in a comment on my last post, that scans shouldn't happen more than once a year, it was the NCCN guideline that I was referring to.

For me, I'm coming up on two years now, and I'm happy to not have another one. I'm not showing any symptoms, and I don't feel the need to see what's going on inside.

Dr. K did say that if I wanted one, he would schedule one. I think that's his recognition that this is an emotional disease.

So, should you have a scan if you're not showing physical symptoms? I think that's something you and your oncologist have to discuss. I had one after 4 years, and I knew the long-term risks that came along with it.

But I don't plan on making that a habit. Maybe if your emotions are getting the best of you, and you really feel like you need one, it's worth waiting another 4 or 6 months? No sense in making a decision based on a bad day. But maybe taking a long time to think it over, and maybe decide that, since you're going to be around for a long time, it's not worth the radiation, would turn out to be the best choice.

Good luck with your decisions, every one. Remember that you have a voice to talk to your oncologist, and a brain to think things through, short- and long-term.

Oncologist Appointment Today

I had a 5 month appointment with Dr. K, my oncologist, today. Everything looks good.

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As I have written before, I haven't been all that happy with my new oncologist (not really "new anymore, I guess, since it's been over a year since I started seeing him). The big problem, as I have said, is that he isn't my old oncologist, Dr. R. So far, Dr. K has seemed more interested in giving me prepared lectures than listening to me. The whole staff was kind of that way.

I thought that might happen again today. Since this was my first appointment of the year, they had to see how tall I am. The nurse and I joked a little about whether or not I was shrinking, and then she took my height (in centimeters). And then she told me what it was in feet and inches: "You're 5 feet 11." I was confused. "Really?" I said. "I've never been taller than 5 feet 9." She smiled. "Yup. 5-11. Like I said, you're shrinking!"

All very confusing, and as usual, I wasn't feeling listened to.

It got slightly better when I saws Dr. K. He saw me for about 5 minutes. We did make some small talk, which was nice. He gave me a (much shorter than last time) explanation of why a CT scan wasn't a good idea. Then he gave me a physical exam. It was a short visit, but I didn't get a frustrating lecture from him this time, so I see that as progress.

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All that's just fine.

The important thing is, I'm in good shape. He took blood again, and there don't seem to be any problems. He did a physical exam, and everything felt fine. And I have no issues of my own to report.

So I'm good for another 5 months.

I hope all of you are doing just as well.

Even More on Idelalisib

Yesterday afternoon, Dr. Jeff Sharman posted a brief video on his blog explaining what has been going on with Idelalisib. Dr. Sharman is a specialist in CLL and NHL, and serves as medical director of hematology research for US Oncology.I've linked to his blog before; he does an excellent job of describing things for patients (who are the main audience for his blog).

I'm glad he posted the video (which was produced for Patient Power) -- I have my own speculations about what has been going on with Idelalisib over the past few days, and Dr. Sharman confirms some of my guesses, and adds a lot more information (from an expert, not just from a Cancer Nerd).

Dr. Sharman points out that there is a kind of mismatch between what we know about Idelalisib and what these new problems in trials have revealed. Why was this approved if it seems to causing infections and deaths?

As he explains, this has to do with the patients in the trials. The earlier trials involved patients who has already been treated for CLL and Follicular Lymphoma. These newer trials involved patients with untreated CLL or lightly treated FL. Since the kinase that is targeted by Idelalisib is important to immune regulation, it's possible that interfering with immune regulation early in the course of disease (say, with patients who have never been treated or were lightly treated) has a greater impact than it would on patients who are later in the course of the disease (who have had it for a while and have had a bunch of treatments already -- like those in the earlier trials that resulted in Idelalisib being approved).

Makes sense.

And so patients who were treated early in their disease, and had their immune systems affected a lot, would be more open to infections -- their immune systems can't handle certain types of viruses.

For Dr. Sharman, there is some value in these trials, even though it resulted in some very sad problems. Basically, we have a better idea of how this works -- it might be a treatment that is better suited to people who have already been heavily treated.

For people still in Idelalisib trials, or who are taking the treatment, it's worth talking to their oncologist and making sure they are being watched very closely for signs of infection. If it's working, and you're not having problems, chances are good you can stay on it.

That was a great video -- very helpful in seeing the Big Picture, especially since the FDA statement was kind of vague.

we may hear more about Idelalisib in the near future, but I think it's probably safe to say that it will remain approved and available for people who have already been treated for their Follicular Lymphoma.

Update on Idelalisib Review

If you haven't read my previous post from yesterday (March 14), read that one first. This is an update to that post.

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UPDATE: Last night (Monday, March 14), the FDA issued a statement about Idelalisib; the manufacturer is shutting down 6 clinical trials involving patients with SLL, CLL, and indolent NHL. There statement is here (and available on their website):

FDA Alerts Healthcare Professionals About Clinical Trials with Zydelig (idelalisib) in Combination with other Cancer Medicines

The U.S. Food and Drug Administration is alerting health care professionals about reports of an increased rate of adverse events, including deaths, in clinical trials with the cancer medicine Zydelig (idelalisib) in combination with other cancer medicines.
Gilead Sciences, Inc. has confirmed that they are stopping six clinical trials in patients with chronic lymphocytic leukemia, small lymphocytic lymphoma and indolent non-Hodgkin lymphomas. The FDA is reviewing the findings of the clinical trials and will communicate new information as necessary.
Health care professionals should be aware that Zydelig is not approved for previously untreated chronic lymphocytic leukemia.
Zydelig is currently approved by the FDA for the treatment of:

• Relapsed chronic lymphocytic leukemia, in combination with rituximab, in patients for whom rituximab alone would be considered appropriate therapy due to other co-morbidities.
• Relapsed follicular B-cell non-Hodgkin lymphoma in patients who have received at least two prior systemic therapies.
• Relapsed small lymphocytic lymphoma in patients who have received at least two prior systemic therapies.

Patients should talk to their doctor if they have questions or concerns about Zydelig. The FDA urges health care professionals and patients to report adverse events involving Zydelig to the FDA MedWatch program.

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I'm still very curious to see what is happening here.

Clearly, the data presented enough of a problem to cause concern in both the U.S. and Europe, so something is up. The challenge, I guess, will be to determine what factor is the cause of the problem: the particular combination of treatments; the way the trials were designed, etc.

Here's my fear: Idelalisib was approved as a "breakthrough therapy" by the FDA, meaning  its approval was based on preliminary trial results -- sooner than most treatments are approved. Would the problems have been see if the Idelalisib went through a full, traditional review? Maybe. But preliminary results have to be followed up by more trials to confirm, so the Breakthrough designation doesn't mean that they get a free pass. It just mans that they get an earlier pass.

My fear, though, is that this will call into question the value of the Breakthrough designation program, which is designed to get treatments to patients sooner than they might have. That's a good thing.

But serious Adverse Effects are not good.

There are other PI3K inhibitors in trials now, too. It will be interesting to see if they get put under closer scrutiny, or if they can show that they are not dealing with the same Adverse Effects.

I'll be keeping a close eye on this situation. It could be a while before anything happens.

Idelalisib Under Review

News out of Europe today:

The European Medicines Agency (or EMA, which is sort of like the FDA in the United States) announced that they were going to review Idelalisib, base on some problems from a couple of trials. One of the trials involves Follicualr Lymphoma.

Before we get to the reason, let's make sure this is clear: The EMA says that anyone who has been taking Idelalisib without any problems should continue to take it if it's working. There are many, many people who are in that situation -- Idelalisib has been great for them, and they have had no unexpected side effects.

However, in three trials in Europe, patients with CLL and with indolent NHL (including Follicular Lymphoma) have been having problems with infections. Unfortunately, some of the "increased rate of serious adverse events" have included patient deaths. The maker of Idelalisib has halted the trials, though they point out that the trials are not using Idelalisib in the same way that they have already received approval for them (the trials are looking at combinations for CLL, and the FL trial involves disease conditions that are different from those that the patients had when it was approved for them).

The FDA has not taken similar steps. According to one article, "The US Food and Drug Administration (FDA) spokeswomen Angela Stark: 'FDA is also looking into this serious matter in relation to the deaths of the patients during the clinical studies.' She added: 'The safety of patients is a top priority and the FDA will communicate new safety-related information on Zydelig as it becomes available'."

Some important things to consider:

First, Idelalisib has been working very well for a lot of people. This does not mean the end of Idelalisib. That arrow stays in the quiver.

Second, I read about a dozen articles that discussed this situation, and they were pretty much all from a business perspective -- sites for people who are interested in investing in the company that makes Idelalisib. And they all say the same thing. I haven't seen (yet) anything from a medical or oncology site that gives any kind of analysis. I hesitated to even write about this just yet, but I saw more and more articles about it, and I figured I should look into it. I'm still looking.

The kind of language the articles use is interesting -- they say the trials involved Idelalisib being used in ways "that were not approved," almost liken they had uncovered a scandal. Of course they weren't approved -- that's the whole point of a trial.

So my take on it, for what it's worth, is that this situation bears watching. I don't think Idelalisib gets pulled any time soon. It will mean watching patients more closely to make sure they aren't more prone to infections than suspected (and I'm guessing the increased infections are coming from Idelalisib doing its job of destroying infection-fighting white blood cells to begin with).

No reason to give up hope just yet.

But there's no reason to think any treatment is a miracle that won't come with some challenges either.

Immunotherapy for Lymphoma

The Cancer Research Institute has a really nice overview of Immunotherapy for Lymphoma -- all lymphomas, not just Follicular -- with a lot of information about current clinical trials for immunotherapy treatments.

Immunotherapy is very hot right now, and has been for a couple of years, at least in terms of the attention that the media has been paying to cancer treatments. Last month, CAR-T therapies were being talked about a lot. Former President Jimmy Carter has been in the news, too, because of an anti-PD1 immunotherapy treatment that halted his brain cancer. Most newer treatments, from what I can tell, are some form of immunotherapy -- a way of using the body's own immune system to fight the cancer.

The article by The Cancer Research Institute gives a quick, general overview of lymphoma and its current treatments, but then jumps into immunotherapy, discussing the four categories of immunotherapy treatments for lymphoma, and then listing some clinical trials for those treatments.

Those immunotherapies are:
1) Checkpoint inhibitors. I've been writing a lot about these lately. They mess with the processes that cancer cells need in order to grow and stay alive. An example of this is Nivolumab, an anti-PD1 treatment, which has a clinical trial for FL. There seem to be more trials for checkpoint inhibitors than any other type of immunotherapy treatment.
2) Adoptive cell therapy. Immune cells are removed from the patient, changed so they can attack cancer cells, and then put back in to do their job. CAR-T therapy is an example.
3) Monoclonal Antibodies. Like Rituxan. If you've been reading the blog for a while, you know something about MABs.
4) Therapeutic Vaccines. These treatments attack cancer cells with particular antigens or targets.

Lots of clinical trials out there, which means the possibility of some nice future treatments.

(Of course, clinical trials need patients. Keep that in mind if you need treatment. Which, of course, I hope isn't going to happen any time soon.)

More on immunotherapy from Lymphomation can be here.

And, hey -- while you're at it, look again at what they have to say about finding and preparing for clinical trials.

Abexinostat in Follicular Lymphoma

The journal Clinical Cancer Research has published the results of a phase I/phase II study of Abexinostat in Follicular Lymphoma and Mantle Cell Lymphoma. The MCL didn't work out well, but the numbers for Follicular Lymphoma look pretty good.

Abexinostat is a one of those targeted treatments that keep things from happening, specifically a Histone deacetylase inhibitor (or HDI). HDIs have actually been used for a while to help epileptic seizures. HDI's, like their name says, inhibited histone deacetylase. Histones are proteins that help control cell division. When a cell divides, it needs to make a copy of its DNA for the new cell, and histones help in that process. HDIs mess with the process by making sure that certain genes pile up and get in the way.

(There are other HDIs out there, too, like Vorinostat, which is also in trials for FL.)

The Clinical Cancer Research article describes a phase I/phase II study.

In phase I of the study, 25 patients with different types of lymphoma were given straight Abexinostat. The patinets were all "heavily pretreated," and so either had a treatment that had stopped working, or that hadn't worked at all. The patients were given different doses of Abexinostat to figure out which worked best.

In phase II, 30 patients with FL or MCL were given the dosage that was determined in phase I. of the 30 patients, 25 could be evaluated. The Follicular Lymphoma patients did better. The Overall Response Rate was 64.3%, and the median Progression Free Survival was 20.5 months. Side effects seemed manageable.

This was, of course a phase I/phase II study, with relatively few patients, so there is still a ways to go before we see how effective Abexinostat really is. But the early results give us something to look forward to.

And the study is more evidence that these kids of targeted treatments really are the future of cancer care.