Tag Archive for: blood tests

Chronic Lymphocytic Leukemia: Shirley’s Clinical Trial Profile

Chronic Lymphocytic Leukemia: Shirley’s Clinical Trial Profile from Patient Empowerment Network on Vimeo

Chronic lymphocytic leukemia (CLL) patient Shirley felt she had a different experience not fitting the typical CLL patient demographic. Watch as she shares about her journey as a BIPOC patient, the value of clinical trials, and her advice to other patients for ensuring optimal outcomes.

See More from Patient-to-Patient Diverse CLL Clinical Trial Profiles

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Transcript:

Shirley:

In my late 30s, I started feeling extremely fatigued, and I went to my GYN. She ran a couple of tests, and she has sent me over to a hematologist because she just determined that it was something that she was not knowledgeable about. Then I had a physician contact me after several blood tests, and they had told me that it was a form of cancer, and it was leukemia, and it was called CLL, which is chronic lymphocytic leukemia.

When I heard the word chronic, I immediately thought, “Oh my God, this means like death instantly.” But they had told me that, “No, it was aggressive, but it’s definitely slow-moving,” and I have a great chance of fighting it. I was concerned because I did not feel like I wanted to be a lab rat, because I was told that I did not fit the demographics for having CLL. Most of the individuals were male of Caucasian descent, and they were much, much older than I was possibly in the late 60 to 70s, so I got a lot of stares and it made me feel very uncomfortable. So, I just didn’t want to feel like they were just like, “Okay, this is a different case. We can make a name for.” I wanted to make sure I was getting the best treatment.

I didn’t tell too many people in the beginning because I really didn’t know what was going on, but a lot of people was able to tell because no matter how much the time of sleep I got…I was always tired. The fatigue is just overwhelming. I decided to just remain optimistic about my future, because I know whenever you’re trying to battle any kind of ailment your attitude means a lot, you have to really put it out there into existence that you’re going to get better and you believe it, you have to really believe it in order to put that energy into finding out about the treatments and so forth. My doctors, they gave me a booklet that was maybe about it, and they said to me, “Take this home, study hematology and learn about your disease, how we’re going to be trying to treat it, and you know what you’re going to be feeling and you need to tell us everything if your nose itches, your eyes burn. We need to know everything that happens.”

And I was just not a complaining type of person, so there were plenty of times where I was experiencing like pain on my side and I was just like, “Oh, it’s probably just gas from the medication,” and then later found out that the medication they were giving me was enlarging my spleen, so it was pushing against my stomach, which was causing me an enormous amount of discomfort. So the doctors had to then give me other types of medication to help treat that issue that I was having, so it was definitely a long journey. This was an unusual diagnosis for someone of my heritage. The doctors explained to me that there was no blueprint for my treatment, this was, they were going to be trying things, they had a team of individuals, maybe it was like 10 or 15 of them, and they’re actually studying my case on this big screen in this room.

So it was constant medication, it was constant them trying, running the blood test, you were always, always getting blood tests, they were always giving you observations. Someone was always in your room, at least every two hours, checking to see what was going on. I just remember some time sitting in the hospital was just feeling very overwhelmed and definitely feeling isolated alone. I remember one time I was in so much pain, like my bones were hurting me so bad that I literally was just losing my mind in the bed. So they gave me some morphine, which I’ve never taken before in my life, and I wind up throwing up the chemo medication that they gave me. it was just so bad. So, the nurses and I were really overwhelmed at that point. I remember contacting family members and telling them, “I need to get out of here, I feel like they’re just trying whatever they want to try on me, and I don’t think it’s working. I don’t feel this is the place for me, like I need to really get out of here.”

So my doctor who was actually giving a seminar in Switzerland was just like…he was really amazing. He said to me, he said, “You are my prize patient. I am working every day really hard trying to get you back to being your 100 percent yourself,” He said, “You’re always like a light of sunshine.” The women that he worked with are always looking in the patient portal, and they’re like, “Shirley is coming in,” like, “Oh my gosh, she’s coming today.” And they’re excited because I always maintained a great attitude, and I always came in there dressed up.

So my doctor also recommended it when my treatment, a hospital stay was over for me to practice on taking out walks and exercising, yoga was very good meditation, they told me to get all these apps on my phone and therapeutic massages, those have been like a savior for me. I think having a good support system around you is extremely important, people who understand. Never be afraid to tell people what exactly you are experiencing. The mental fatigue that you go through is really unpredictable, and it’s off because that was not something that they, that no one prepared you for. So my doctor and his colleagues, they were just one of the greatest teams that I have experienced, them being very transparent about what was going on with me, even when I was at one time being very stubborn, I got so upset that I pulled the IV out of my arm and I was like, “You know what, I’m not doing this, I’m tired. I’ve got to get out of this hospital. I can’t stay here.”

I mean, people were just so sick, and this is not me. And they had to assure me, “It is you. You are sick, and you do have a blood cancer, and the sooner you come to terms with that, the more calm you’re going to be in being susceptible to accepting treatment. We’re here to help you, but we need you to tell us if something is not working, you don’t feel good on what’s going on in your body, we need to know.” The blood tests don’t lie, they tell them exactly what’s happening, the doctors know if the treatment is working, they monitor the CLL extremely closely. They were way more advanced at honing in on the type of treatment that I needed, so I was really assured that you’re in the right hands, and after when I started feeling a little bit better, then my trust totally opened up in staff, because I saw that they were excited about my treatment working. They were giving me the three combinations of chemo, and they were like, “This combination is working for you now.”

They started a new trial which was bringing in venetoclax (Venclexta) along with the rituximab (Rituxan), and that is what really started sending me on a better path, getting better. And then once I came off of the rituximab, which was an IV-infused chemo treatment, they decided to just keep me on the pill form of venetoclax, I was able to go into the office, which I was ecstatic about.

Advice I like to give to patients who are considering a clinical trial is definitely ask a lot of questions. Don’t be afraid, don’t be shy or hesitant and don’t feel like you feel like you’re ignorant. And always address it with a positive attitude. Keep in mind that they are there for your best interests and trying to get your health back to normalcy. Just know that you’re not in it alone. And always find someone that you can always have a conversation with if you don’t feel comfortable. Never be afraid to ask questions and just even if you do look different as opposed to everyone else that… and just get that everyone else that is sick. Don’t feel like you’re in it alone, regardless of how you look for what your demographic background is, just know that the team that’s there that’s in place is always fighting for you, and you can always say no or get a second opinion. That’s very important to know that you have options.

So, never feel afraid to ask about the clinical trials and do your research, it’s important. It’s inspiring to see people on the leukemia organization website that are exercising, they go for runs right after they receive treatment, that inspired me to say, I’m going to out and take the dog out for a walk or go out for a run and help myself get better,” and it works. It works, it really does.

Chronic Lymphocytic Leukemia: Fran’s Clinical Trial Profile

Chronic Lymphocytic Leukemia: Fran’s Clinical Trial Profile from Patient Empowerment Network on Vimeo.

Chronic lymphocytic leukemia (CLL) patient Fran was diagnosed over 20 years ago and has traveled long distances for care. Watch as she shares her CLL journey and the benefits that she’s experienced from seeking out CLL specialists and clinical trials.

“I just think that clinical trials play such an important role in the future…we’ve come such a distance in my 20 years that we would have never come had we not had people that came before me in clinical trials.”

See More from Patient-to-Patient Diverse CLL Clinical Trial Profiles

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Transcript:

Fran:

Hi, my name is Fran, and I am 80 years young, just celebrated my birthday. And I have had CLL for 22 years. So, I developed CLL while I was still working as a nurse and as a diabetic specialist within a hospital setting. I was diagnosed as many are, by a simple blood test, having no symptoms. It was really done as part of my military requirement.

And I continued to work and continue my military career. I was a single parent, I am/was a single parent at that time, and I was raising three girls, so I had a busy life, and this was just a sideline as far as my health was concerned. I was in good health, but as the years went on, after two-and-a-half years, my count started to rise again, no symptoms. And the local oncologist that I was seeing decided that it was time for me to begin my first treatment, which was a very simple treatment again, as far as I was concerned, because it was an oral medication that I had no side effects whatsoever from, and it was easy to take once a day, and I did get some improvement in my blood work, of course. It did not put me in remission, but it brought down my numbers a little bit, and I was able to go sort of morally along for another two years when then it became evident again, not because of how I felt, but because of my numbers that I needed additional treatment. This treatment was a little bit more complicated because it was FCR, and that’s chemotherapy intravenous.

But I did say myself, “You need to start paying more attention to this disease,” and I went…I did go for a consultation at a university, about two hours from my home, and the physician was pretty direct with me and saying, “You need to start to pay more attention, get more information, have more testing done regarding the type of CLL you have,” at that point, it was the first time I had heard mutated, unmutated, which I know sounds probably a little crazy with my medical background. But again, I was able to put it in the rear-view mirror, the disease because I felt so well, and/or maybe it was denial.

I was able to come out of retirement and start to teach nursing part-time and work some other jobs. I got married. Life was good, I mean it was even better than good, and my pattern has been that I would get the treatment, get my CLL under control for about three to three-and-a-half years, that was about the time that I started, the numbers started to increase. And so my local oncologist here in Maryland said, “Well, we really need to be looking for something different,” and it was at that time when iguratimod (IGU) had just come out of clinical trials and been approved, so I was in this area, at least one of the first people in their practice to go on iguratimod.

Even though it’s not comfortable geographically, but to begin to look for a specialist and…so three years into iguratimod, I did that. I went to a university hospital setting, about three hours from my home and had way more thorough work-up, but more a work-up that included more tests that were able to give a clearer picture of my CLL, where it was at that point. And this group of doctors at this university setting said, Well, you were on track to maybe another year, and iguratimod to the end of the line as far as treatment for you, and you probably need to be looking at perhaps venetoclax (Venclexta) as your next option.

And I discussed actually with one of the local oncologists about going to see a specialist, and he encouraged me, he did not discourage me, he said, “We’d like to continue, we can play a role here, but we understand where you’re coming from.”

I am so glad that I made the decision, I did, because there is no doubt that this decision at the end of the iguratimod journey for me. I was going to be faced with another crossroads of where do I go from here as far as treatment, and I am quite sure had I not made the decision to go to a research university setting with a specialist that really is heavy into research.

I’m not sure that I would have…I would have ended up on a clinical trial, I’m not sure…I could have navigated all that myself, even with my medical background. Sure, enough the iguratimod did come to an end. And as I did, I was truly, really ready for venetoclax and a physician specialist, CLL specialist that had been at the university setting that I went to, as I mentioned, for my care, he had left that university and moved on a little further away from where I live, I contacted him just for an opinion, and he said, “Well, why don’t you come to see me?” I was in Florida at the time, and so I said, “Okay,” I would. And I did. And he broached the clinical trial.

The benefits definitely outweigh the risks for me. I didn’t realize that I was one of the first 10 or 12 people to take this drug, but I don’t think it would have made any difference because I knew that I had faith, first of all, in my physician and his knowledge, I had faith in the drug as they explained it to me, it was a new way of addressing mutations, and I just felt that this was a good pathway to be on, and that the risks, I felt would be handled by my physician and I would be watching for them, so…I do feel in my case, it was definitely worth the risk. I would say though, that people should really think and read and get as much information as they can about the specific trial that they’re considering, but know that there are just some questions, especially early on, that can’t be answered because they don’t know the answers.

I believe wholeheartedly in trials, and I would say that you have to deal with the, I think the emotion and the fear, the trepidation, this is something new, and try to work through that and concentrate on the positive. I just think that clinical trials play just such an important role in the future that you know of all of medicine, but particularly CLL we’ve come such a distance in my 20 years that we would have never come had we not had people that came before me, in clinical trials. On the other hand, I think you really do need to think about not only the immediacy, but the intermediate and the long range. What do I do if this happens or that happens? That I have to think of this.

This is part of my life now. This is something I have to commit to.

So it’s given me years with my family, with my girls, with my grandchildren, I’m getting to see kids off to college, into high school, Bob and I, my husband have had years that I never thought that I would have.

Is MGUS More Prevalent in BIPOC Communities?

Is MGUS More Prevalent in BIPOC Communities? from Patient Empowerment Network on Vimeo

Does the multiple myeloma precursor of monoclonal gammopathy of undetermined significance (MGUS) occur more frequently in minority (BIPOC) patients? Expert Dr. Sarah Holstein from the University of Nebraska Medical Center shares information that myeloma studies are researching on Black, Indigenous, and People of Color patients and how to improve myeloma awareness and care.

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Transcript:

Dr. Sarah Holstein:

:  When we look at data sources like the SEER (The Surveillance Epidemiology, and End Results) data source, it’s not necessarily so granular that we can always distinguish whether the population is Black/Hispanic, Black/non-Hispanic, but really where I’ve seen the increased risk is whenever there are population-based studies and they describe the population at least in the U.S. as Black. I will admit I don’t know the details as to further sub-division amongst the category of Black and whether or not it’s appropriate to use the term BIPOC in this setting with respect to why do Black Americans have higher risk of plasma cell disorders than white Americans? I think that’s still a question that we can’t completely answer. There are a lot of really good research teams in this country and really worldwide that are trying to understand the different genetic-based risks, and it’s clear based on some studies that there’s some differential with respect to for example, what the frequency is of particular genetic abnormalities that happen in the plasma cells as they go from normal to abnormal. So, one example that I’ve seen is a higher frequency of translocation 11;14 in patients who are Black compared to patients who are white, but ultimately, I don’t think there’s an easy, easily understood answer to that very complex question right now with respect to why the risk is two to three-fold higher in Black individuals compared to white individuals. 

And then that’s a little bit of a separate—I mean it’s related, but in some ways, and that’s somewhat separate from the issue of when Black individuals actually get diagnosed with myeloma, whether that’s at a more advanced state of the disease than in white people that I think is a little bit more dependent on access to care as well, as knowledge of the disease. I would say that in general, myeloma is not a cancer that most Americans are actually that familiar with, and that’s regardless of white, Black, race or ethnicity, it’s still a relatively rare cancer and most people have never heard of it and don’t know other people who’ve had it. But I think what is key in the Black community is to really increase awareness of not only myeloma, but the precursor condition MGUS just like there have been enormous efforts to increase awareness of the risks of high blood pressure and diabetes, and how that can affect health later on, there’s also… I think sometimes a decreased frequency of access to primary care, sometimes myeloma is picked up just because of routine blood work, and that can be done sometimes on an annual basis by a primary care provider. And if individuals aren’t getting their annual physical and annual labs drawn, then by the time myeloma presents itself, sometimes it’s at the point where it’s presenting, because bad things have happened, like bones are breaking, or patients are very anemic, or there are serious infections, etcetera, as opposed to being found in a more asymptomatic stage when abnormalities such as high protein levels in the blood are noted that patients are otherwise feeling well. So I think you raise some really excellent questions, and I think there’s a lot of room for improvement in this country for not only improving the research so that we understand what the genetic bases are for developing plasma cell disorders, but also increasing education throughout this country, but specifically in the Black population, and then making sure that everybody has access to care.

What Should CLL Patients Know About Their Blood Work?

Ask the CLL Expert

Ask the Expert: What Should CLL Patients Know About Their Blood Work? from Patient Empowerment Network on Vimeo.

CLL experts Dr. Susan Leclair and Dr. Justin Taylor discuss how to understand testing with CLL, how CLL patients can advocate for the correct testing, making the most of doctors’ appointments, and more.

Downloadable Resource Guide


Transcript:

Andrew Schorr:

And hello from Southern California. I’m Andrew Schorr. Welcome to this Patient Empowerment Network program produced by Patient Power. We’re so delighted you are here. I’ve been living with CLL since 1996. And so, testing was not as sophisticated then, and it’s come a long way and there are a lot more choices now. So, in this program, we will be discussing how do you know when you need treatment? What tests are important when you’re in a sort of watch-and-wait period? If you start treatment, how do you know if it’s working? How it’s monitored? If you’re in remission? How do you know how deep that remission is? Should you need treatment again, are there other tests that need to be repeated, or new tests to be done? Lots to talk about. I want to thank the Patient Empowerment Network for putting this all together, and for their financial supporters who have no editorial control, that is AbbVie and Pharmacyclics. So, thanks to them for supporting patient education. Okay. If you have a question, send it to cll@patientpower.info. Many people have, so we got tons of questions, and we’ll get through as many as we can in this Ask the Expert program, helping all of us with CLL understand our blood work and what’s needed and when. And we have some great guests with us. First of all, I wanna go to my dear friend who I’ve know most of these 20-plus years as I’ve been living with CLL, Dr. Susan Leclair, laboratory science guru. She joins us from Dartmouth, Massachusetts. Hi, Susan.

Dr. Leclair:

Hi.

Andrew Schorr:

Welcome back to our program.

Dr. Leclair:

And I think we were both very young when we first met.

Andrew Schorr:

Well, you didn’t have grey hair. But I cannot say that I had a full head of hair, but here we go. And I didn’t lose it because of chemo. It was gone, hereditary. Okay. And now let’s scoot down to New York City to one of our top cancer centers in the world, Memorial SloanKettering, where we’re going straight to the lab. And that is Dr. Justin Taylor, laboratory researcher, and also CLL clinician. Justin Taylor, thanks for being with us.

Dr. Taylor:

Hi, Andrew. Thanks for having me. Happy to be here.

Andrew Schorr:

We’ve been wanting to get you with us for a while. And he, folks, is where action happens. They start with mice, and then they start working on what does it mean to all of us with our blood? And, of course, human clinical trials, and Memorial Sloan-Kettering has helped lead the way. Okay. Susan, are you ready to go?

Dr. Leclair:

Sure.

Andrew Schorr:

Okay. So, people worry, what about their tests? And one thing I wanna get off our plate right away, and I’ll just say it for me. So, I get immunoglobulin infusions once a month to boost my immunoglobulins. And you can help us understand what that is. And I get a blood test at the same time. And I worry if the platelets go up a little, or the platelets go down a little, or and then there’re all these MCVs and blah, blah, blah. I don’t understand what they mean. And I worry sometimes if there’s a little blip. But we really worry about—we’re not even worried. We watch the trend, right?

Dr. Leclair:

Right. I would not panic unless you see two consecutive numbers going in the same direction. Now there are a lot of caveats to that, but we don’t have five days on the program. So, basically, statistics don’t work, unless you’ve got at least three values. So, if you started at a value of 1.0, and the next time you got it, it was 1.5, and the next time you got that same test it was, I don’t know, 0.62, they’re not in the same direction. There’s no big change. You’re kinda okay.

You begin to worry only if it goes from a 1.0 to a 2.5 to a 5.0. Now you’re beginning to get a sense that things might be moving in a specific direction. So, you wanna wait. I know it’s not watch-and-wait; I know it’s watch-and-worry. But you have to wait for at least the third one of the values. It’s part of the reason that your physician will use that horrible word, “Fine,” when they look at things, and they say, “Oh, no, this looks fine.” It’s because they’re not seeing that trend going in one direction or another.

Now some tests, you want the trends to be higher; some you want lower. But think about you need three values going in the same direction in a row before something can be considered worthy of, well, worry, or at least worthy of a question.

Andrew Schorr:

Okay. Thank you for that. Justin, I wanna ask you about something we talk about a lot now in CLL, and as you get to the different chromosomal deletions, I guess you call it. So, we’ve known for a long time that one that led to more aggressive CLL was the 17p deletion.

Dr. Taylor:

Yes.

Andrew Schorr:

And now we have medicines that kind of work on 17p, which is cool. So, we got a question from Robert Schneider who said on the CLL patient with 17p, been treated in his case with Venclexta or venetoclax for two years, and had reached MRD, minimal residual disease negative in my bone marrow and blood, what are the pros and cons of stopping treatment if I’ve had this 17p? So, where are we now measuring 17p? And help us understand this MRD level.

Dr. Taylor:

Okay. Yeah. Lots of great points there. I’m glad you brought up the 17p. That is historically a more bad prognostic marker, although as you’ve brought up, we now have drugs that can work for patients with 17p deletions. So, we’re very excited in the clinic to have Ibrutinib and Venclexta, or venetoclax—I’ll use the generic names—as options for our patients with 17p deletions, or other abnormalities that include genes on 17p such as the p53 gene.

And so, those are effective. And we’ve seen some patients that have been lucky, as David, to get into a minimally residual disease, or measurably residual disease negative state from these treatments. But I’d say it’s still the level of our knowledge, at this time, does not allow us to know whether it’s completely safe to stop. And that’s something that’s currently being tested in clinical trials, both in the US, as well as abroad.

And so, we have a trial here at Memorial Sloan-Kettering testing patients who have been on Venclexta and get into this MRD-negative state. If they’re able to stop the drug and it’s basically randomizing—or not randomizing people, they’ll be allowed to decide whether they wanna stop or not.

And then following them to compare the patients that stop versus the patients that didn’t stop to see what the difference in terms of relapse rates are, overall survival, whether it is gonna change the outcome of the disease whether you stop or continue on the drug. So, that’s a great question, and it’s currently one that we’re trying to answer as fast as possible.

Andrew Schorr:

Okay. And, Susan, just so we understand this MRD, these are super-sophisticated tests, right, now looking for cancer cells at like I almost think, maybe not the nano level, but, right? And we haven’t had these for a long time.

Dr. Leclair:

Oh, no, they’re relatively new. For those of us who do have different colored hair than what they started out with, once upon a time, it was one CLL, and we had no treatment for it. And now we have multiple versions of CLLs. And we have, oh, maybe, I don’t know, 10 possible different fairly well-known, fairly well-described genetic anomalies. You’ve got different drugs that go along with it.

So, in each one of those, complexity adds confusion at the same time. So, some of our tests are—oh, no, I take that back. All of our tests have limits. I test for something, and my limit is one in a billion. Well, supposing you have one in two billion? I’m going to come up with a negative, not because there’s nothing in there, but that it is there at such a low number, I can’t pick it up.

So, there are times when you have these results, and minimum residual disease is a great phrase for it. All I can tell you is to the limit of my testing, to the limit of every scientific test we have out there, I can’t find a malignant cell of your CLL in there. Does that mean that it’s absolutely not present?

Andrew Schorr:

Right. But we can measure it better than ever before. And it gives us some confidence. And I think patients want to know. But so, that goes to Justin. Justin, you’re at one of the largest cancer centers. There you are in the lab, and you do all sorts of sophisticated testing. But many of our viewers are around the world and they’re not necessarily being treated at a big academic medical center.

So, the question is, what tests are necessary? So, maybe you could help us understand. If you are out there in the hinterland, and you needed to help yourself as the physician, and the patient just kind of understand what’s going on, what’s the basics? So, first, let’s start at diagnosis. What’s the basics to know what’s going on? Do you have to have a bone marrow biopsy? Do you do CBCs? Do you have to do what we call FISH testing mutational status? What’s like the basic?

Dr. Taylor:

Yeah. Thanks. And we definitely can do, as Susan was saying, many, many tests with different sensitivities and specificities, but kind of the gold standard of proving whether adding these tests makes the difference is to do a clinical trial or a prospective trial, I guess, where you measure these things before patients get treatment, and then see which of them makes a difference in the outcome.

And when you add them all into a kind of analysis that includes all of these tests, which ones are important of themselves because some tests are markers, basically, of something else that you can measure. So, that being said, there have been many studies like this to try to see whether we can add in any of these new tests that have been developed in the decade to the kind of gold standard. And many times all of the new tests that we add aren’t able to distinguish that much more than what the basic tests show, so I…

Andrew Schorr:

…okay. So, literally, let’s just tick off some. Bone marrow biopsy; critical to do?

Dr. Taylor:

That’s very controversial. We still do that. I don’t think that it’s critical in making the diagnosis. That could be made from the peripheral blood flow cytometry, which tells you the markers on the surface of the cell, that they’re different than normal B cells. We still do the bone marrow biopsy to get a sense of the stage of the disease, how much CLL there is. But it’s not absolutely required for the diagnosis.

Andrew Schorr:

Oh, okay. And what about so-called FISH testing; is that important?

Dr. Taylor:

I think it’s important, based on what we talked about with the 17p deletion. It can detect that. That’s a big change on the DNA, on the chromosomes, that can be detected by FISH. And, yeah, many of the tests I was referring to before are looking at specific genes. I don’t think that those are necessary. They definitely can give some insight to the treating physician, but.

Andrew Schorr:

Okay. And then the last one is that I always get this backwards—is it IgVH, IvGH—but the mutational status, why is that important?

Dr. Taylor:

Yes, the IgHV mutational status, if I got it right, is important because there’s—basically falls into two camps. You can have unmutated and you can have mutated, and you would think that the mutated would the worse, but it’s actually the unmutated that has the worse outcomes.

And that’s important, because it’s been shown that this unmutated set of IgHV-unmutated CLL may not be the type of patient that you want to give chemotherapy to. They may not respond as well to chemotherapy. That may be something you want to go straight to one of the new agents.

And for the mutated patients, which have a little bit better prognosis, new agents are definitely on the table for them also, but there’s a subset of those patients who, with chemotherapy, a study done at MD Anderson that followed these patients 20 or more years after chemotherapy, a subset of those with IgHV-mutated CLL did not require further treatment. Essentially, we didn’t say that they were cured, but they were as if they were cured. They only got one treatment with chemotherapy and never required anything again.

Andrew Schorr:

Right. Well, okay. Let me raise my hand. I was in the Phase II trial for chemo, fludarabine (Fludara), cyclophosphamide (Cytoxan) and then rituximab (Rituxan) added in 2000, and I had no other treatment after six months of therapy for 17 years.

Now, I had an MRD test along the way, and dear Dr. Wierda at MD Anderson said, “You know,” with the testing they had then and this is several years ago, “You’re not MRD-negative. You’re probably gonna need treatment again. I feel confident you will.” And so, I knew there’d be another shoe drop. But with the chemo, I did get a long remission. Susan, one of the questions we’ve had is, and you’ve heard this before, people get different lab values from different labs.

Dr. Leclair:

Yes.

Andrew Schorr:

Maybe they had it here. So, you’re like in the international organizations. Shouldn’t there be like one standard; if my hematocrit is this, that’s where it is for everybody? I mean, why does it vary?

Dr. Leclair:

Because you do. One of things that is critical here is that you, the patient, have different levels of hydration from the morning when you get up. This makes absolute sense when you think about it. When you roll out of bed in the morning, you’re not really as well hydrated as you might be at 4:00 in the afternoon, or that you’re not as well hydrated after you’ve run for two hours than you were before it.

Since most of the initial blood work that you use, both in diagnosis and in monitoring, is based on volume, if you got diagnosed with a CBC that was drawn at 3:00 in the afternoon, for the name of consistency, could you keep having your blood drawn at 3:00 in the afternoon? Because that will provide us probably a more constant basis of you are hydrated at this level all of the time.

Andrew Schorr:

Right. But you know what—yeah, but I’m not asking just that question. If I go to the same lab and test at the same time and drink water before, but so, we get lab test results, and in the case in San Diego, it has H’s and L’s, highs, lows, out of the normal range, and I got a bunch of them, okay? But what I wanna know is, is that standard of what’s within the normal range the same at every lab? Or if it isn’t, how come?

Dr. Leclair:

Well, in the case of hemoglobin, for example, if you live in Telluride or Vail or Aspen, you’re at a higher level. There’s a lower amount of oxygen in the atmosphere, so you need more hemoglobin to grab the oxygen from your inspired breath and bring it to the tissues. So, pretty much everybody who lives above Mile High Stadium, so to speak, it’s not that anymore, but everyone will remember it, is probably gonna have a higher hemoglobin than somebody who’s at a lower one.

If I’m in the lab and I’m developing a set of reference ranges for the physicians in that area, then if you come bouncing into Vail and have a CBC, you’re still at your California seaside hemoglobin level. To somebody who’s expecting people to have a higher one, you will look as if you have a lower hemoglobin.

Andrew Schorr:

Right. And I’m going to Colorado in a week or so, so, yeah. Okay. I get it. That was a question we had from several people. Now, Justin, I got a question from you. A lot of the people here, a percentage, have been diagnosed with SLL, not CLL, but we understand they’re basically treated the same. So, help us understand the difference. But what they want to know is should their testing be different?

Dr. Taylor:

Yeah, that’s a great question. We do think of them as the same disease. It’s just the manifestation. In CLL, the abnormal B cells are mostly circulating in the blood, leading to abnormal blood tests with high lymphocyte count.

Whereas in SLL, or small lymphocytic lymphoma, a name that was given because primarily, the abnormal lymphocytes are in the lymph nodes and they don’t circulate in the blood, so patients with SLL would be detected because they have abnormal lymph node swelling.

They might go to a physician who primarily treats lymphoma, which is another related disorder that presents with abnormally enlarged lymph nodes. And so, they oftentimes are monitored different, treated differently, because the cells are not circulating in the blood, so they can’t be detected as easily through a blood test.

So, in my practice, I use the physical exam and monitor wherever the lymph nodes are through examining them, just physical examination. And you can also do a CAT scan, or a CT scan it might be called as well, to measure throughout the body the places you can’t examine within the thorax and abdomen if there are lymph nodes there also.

Andrew Schorr:

Okay. So, the cells are not floating around, so it’s a little different as far as monitoring goes. Okay. So, let’s get to monitoring. Justin, I’ll ask you this, too. So, people wonder, okay, if I’m in remission, how often do I need to be monitored? So, you’re doing the physical exam. My doctor, Dr. Kipps, feels for lymph nodes. He digs under my armpits. He does a lot of stuff.

And that part’s not fun. But and I get these regular blood tests monthly, which are just zapped to them when I get my immunoglobulin, so they’re keeping a watch on me. And I should mention that I have another condition, too, myelofibrosis. So, I got two doctors watching me pretty carefully. But, basically, I don’t see them very often. So, related to testing, is that really an individual thing with your physician as far as just like CBCs, Justin?

Dr. Taylor:

Yeah. To me it’s dependent on each patient, and, as Susan mentioned, the trend of the blood counts, and what treatment you got, how long ago that was. In a general set of rules, the sooner it is after treatment, you might be monitoring it more closely. And then as time progresses, everything’s been looking okay, the time can be spread out, again, based on the individual patient. If there’s continuing, ongoing reason to watch some specific lab test then, as you mentioned, it might be done every so often.

I would say unless there’s something particularly that you’re keeping an eye on, such as you immunoglobulins, you probably don’t need it once a month; every three months is generally acceptable, if everything looks normal, there’s nothing. But in your case, you’re getting these IVIg infusions, and so, they’re testing the levels to make sure you need them every month. And so, it comes down to each individual patient.

Andrew Schorr:

Susan, so, we mentioned this a couple of times, IVIg. And some of our patients who are on this program get it, too. So, what is immunoglobulin, or what are Igs? What is this stuff?

Dr. Leclair:

Immunoglobulins are essentially proteins. They can be transport proteins. You eat a steak, your body absorbs the iron, and it needs to get put on a transporter, so that it can be moved around. So, there’s transport proteins. There are modifying proteins that control how fast or how slow something’s gonna happen.

But the ones you are interested are the immunoglobulins that are antibodies. Now we all know about antibodies because there’s certainly been enough argument across this country in the last few years about antibodies in terms of getting immunizations for children against measles and mumps and other childhood disorders, whether or not it’s Zika, and all the rest.

You have in you, over time, built up a body of antibodies, a collection, an encyclopedia of antibodies that remember that you had that disease 22 years ago. And while you’re not actually making a whole lot of those antibodies, you’re making enough of those antibodies to make sure you’re never gonna get it again.

What happens with CLL folks is that they don’t make either functional antibodies, or they don’t make enough, which means that you at your age might have had an immunization for mumps a long time ago. My guess is you don’t want to have mumps right now. So, we should give you some pre-informed, pre-manufactured antibodies against mumps that will help whatever cells that are in your body that are trying to make mumps antibody to give you enough mumps antibodies so that you never get mumps again.

So, this a procedure that is giving you this infusion of antibodies, is to keep your system at a place where it won’t get sick when you’re in a subway and someone sneezes, when you’re in a restaurant and someone coughs at you, when you find yourself somewhere with a friend who says, “Gee, I hope you don’t mind, but I’m still getting over X.” So, it’s protective for you.

Andrew Schorr:

Okay. And Dr. Kipps here in San Diego says, “Andrew, if you want to travel,” and that’s true, and I like to travel, and we’ve seen many of our CLL friends when we do, he said, “You gotta have the IVIg infusions.”

Andrew Schorr:

Justin, just so we understand, what about—she mentioned immunizations. First of all, where does immunoglobulin come from? My understanding is it’s made from somebody else’s blood. I’m getting like a blood product, hopefully, squeaky clean in that, and I’m getting some immune benefit from that. Is that the idea?

Dr. Taylor:

Yeah, that’s correct. So, the antibodies come from B cells, and that’s why CLL is a disease of the B cells. And so, that’s why they’re, as Susan mentioned, they’re not forming the proper antibodies. So, we can get these healthy antibodies from donors, and it’s usually a pool of those antibodies to get enough to give you that boost.

And I just wanted to mention that not every patient with CLL needs these. You can measure the immunoglobulin levels in the body, and if they’re normal, you may not need the extra boost, especially if you’re early CLL and watching and waiting. And, again, and if patients are getting recurrent infections, that’s another reason that they might need transfusion.

Andrew Schorr:

Right. Yeah, and I’ll mention, to be clear in my case. So, I went 17-year remission, folks. I did get some sinus infections. Usually, if I got a cold, I got sinus infections, took antibiotics, quicker than people who don’t have CLL, of course, and it knocked it out, okay.

What we noticed is, after I had retreatment for CLL with a monoclonal antibody, obinutuzumab or Gazyva, with steroids in my case, about almost two years ago I was getting more often infections. The CLL was controlled, but, like Susan just said, my immune system was inept and it needed some help. And so, Dr. Kipps decided I needed IVIg. But that’s a personal thing with you and your doctor. You may be monitoring how frequently, just what Justin just said, how often you’re getting infections, because it’s certainly not for everybody.

Okay. So, let’s talk. I wanna understand something, Justin. CLL can change over time. So, we mentioned the 17p deletion, or people hear this other alphabet soup, 13q, and all these different things, or trisomy, and all these things. So, the way you start out, is that the way you may be years down the road? And if not, how come?

Dr. Taylor:

Yeah. For some reason, CLL can change. A term you might read about is it’s called clonal evolution. It sounds like “Star Wars” with the clones, but you can basically have the CLL that you started with, it can acquire other mutations, or other abnormalities that you’ve listed there over time, so, even untreated CLL, does change over time. We don’t really understand fully why that is. We know, in general, cancers do that, so CLL seems to be at the faster rate of that ability to change the genetics.

And so, I think the CLL you end up with might not be the same as you started with. And so, this comes to another question that was asked of when to do this testing for 17p IgHV. You often hear the argument that you don’t need those until you’re gonna start treatment because if you get them at diagnosis, and then you’re gonna not start treatment right away, they may change over time, and you wanna reevaluate those at the time of treatment.

So, that is why some patients might not have all the testing done at the time of diagnosis. Not every doctor feels that way, so some patients do get all the tests run at diagnosis, and then again when it’s time for treatment based on the progression of the disease and symptoms. Then often we repeat those just because there’s the possibility that within that time frame, whether it’s a year or several years, that these markers can change.

Andrew Schorr:

Susan, you and I have been around this a long time, and you remember one of the really wonderful patient advocates years ago, Granny Barb Lackritz. Barbara Lackritz. We called her Granny Barb. And one of the words she told us Esther and me, years ago when I was diagnosed, was, “Chill out.”

So, have this array of tests now. And there will be some of our viewers who say, “Okay, I want this test, and I want this test, and I want this test, and I want this test.” And, “Oh, my God, this has moved a little.” And, “Do I need to be retested?” What you tell people to kind of take a deep breath, even though you have this array of testing now?

Dr. Leclair:

I tell them to take a deep breath and to slow down. This is not a disease that is going to “harm you.” That may be in quotations. This is not a disease that will harm you today or tomorrow or even in a year. This is a disease that will allow you to think it through. Well, not necessarily slowly, but deliberately. What you wanna do on these tests is not say, “I want every single one of them.” Because then you’ll get a lot of information you can’t interpret. What you want is, “Let’s do one test at a time.” The results of that test will lead you to the next test.

For example, the CBC gives you a very high white count, and it looks like it’s all lymphocytes. Okay, what do you do next? Well, the next logical question is: Who are these lymphocytes? What are they doing? So, that’s when you do the flow cytometry, and you find the answer of who are they at a gross level, at a fairly simple level. Oh, they’re B cells, or maybe they’re T cells. And in that answer then provides you with the next thing you want to do.

So, instead of ordering them all like eating and taking every single bite out of a huge buffet, you might wanna just wait and follow the detective story as it goes along. And what that will allow you to do is, well, these were my answers in September. Well, these are my answers plus a new one in November. Oh, well, these are my answers in September and November, and now in February. And so, you begin to develop a story. You begin to know your cells. Your physician begins to know your cells.

You can say things like, “Oh, well, in January, I had a cold.” All right. Let’s about then how that cold might have affected the results in January. You already know what the results were in September and November. Let’s look at this in context. You have the time. Use it.

Andrew Schorr:

Right. Now, Justin, we’re talking so much about testing, but you referred to physical exam. So, I think we have to be fair and say you guys look at the complete picture. Like, for instance, is my spleen enlarged? Do I have night sweats?

Do I have new lymph nodes? How big are they? Where are they? Right? Am I getting a lot of infections? Right? So, you gotta look at the whole picture, right? It’s not just the numbers. Correct?

Dr. Leclair:

Absolutely.

Dr. Taylor:

That’s right. Absolutely. Yeah, it’s personalized medicine before that term came to mean doing genomics. It’s every person is different; every situation is different. As Susan mentioned, situational things can happen with infections that change the numbers, and it’s important that – We’re not gonna be able to guess that, so discussing with the patient, hearing the history, taking the time to do the exam, and then, again, putting that into the context and the historical context with that patient.

So, that’s why the patient-doctor relationship is very important. Of course, it’s always recommended, if you want a second opinion, to hear from another doctor or someone that specifically does CLL. But just having your physician that’s known you for a long time is very valuable, as well.

Andrew Schorr:

Let me put in a plug for second opinions for a second. So, Justin’s at one of our premier cancer centers, Memorial Sloan-Kettering. There’re a few of them in New York, where he is. There may be one this way down the interstate from you in New York, or in London, wherever you may be.

And I would say, with a long-term illness, it gave me confidence to check in with an academic medical center. And I actually had teamwork, when I was in a clinical trial, between a local cancer center and a university cancer center.

And I got those doctors talking. That gave me confidence. And when I needed treatment, actually, and ultimately in a trial, they worked together.

So, one of the questions came in and said, “Well, when should I check in with a CLL subspecialist like Dr. Taylor is, even in the lab?” Well, along the way. But as Susan said, “The house is not burning down today.” Okay?

Now, Justin, you’re in the lab there. I have a question for you. So, I have three kids. And one of them, and some people know, are Ruthie, are the producer of this program. And so, we wonder, when you talk about genomics, is there some test we should do to see if my children are at risk for CLL? And should we do that routinely, like you might do in some other more hereditary conditions, when we really don’t know, is there a real hereditary connection in CLL?

Dr. Taylor:

Yeah. We talk about the genetic tests, or the genomic mutations, and that always invokes something hereditary in the genes. But when we actually do these tests here at Sloan-Kettering and other places, we will take the CLL cells, take the DNA from those, and we also get a sample of normal tissue. So, often it’s a swab of the side of the cheek, a swish of saliva, sometimes fingernail DNA, something that we can get that we don’t think has any CLL in it.

And then we sequence them both, and we’re comparing the CLL cells to the normal cells to try to detect the mutations that occurred in the CLL that make them different than the normal cells. So, all of these mutations that we’re talking about are something that happened in the CLL cells sometime during your life. And we’re finding out now that these could have been there, these mutations could have been there for years before they finally manifest this CLL. But they’re not something you were born with. They’re not in the cells of your body or the cells that are passed down to your children. There are very rare cases of heredity CLL, but my understanding is they’re exceedingly rare. I haven’t come across them, but they’re reported in the literature. So, if there’s a very, very strong family history of cancer between generations, a bunch of siblings have a cancer, then that might be a time to consider hereditary genetic testing. Otherwise, CLL is typically thought to arise in these cells along your lifespan. You’re not born with them. They’re mutations that are occurring as you age.

Andrew Schorr:

Okay. So, I’m not recommending my kids get some tests. And also, I’d say, and Susan knows this so well, and Justin, as you’ve gone through your training and graduated to be in the lab and seeing patients, everything’s changed. Everything has changed during my time. And so, if God forbid, one of my family members developed CLL years down the road, it’s gonna be different from what it is now. It’s gonna be different.

So, Susan, just so we understand, go back to something that we talked about, about clonal evolution, okay? And the CLL kinda changing, taking the winding road. Is it the idea that the cancer cell is kind of trying to figure out a way around the medicines, and just proliferate? It’s like sneaky?

Dr. Leclair:

Oh, they’re definitely sneaky. That’s absolutely correct. There are a number of situations that are involved in here.

We don’t really know which one goes with which disease, or if maybe more than one does. But, yes, I suppose, philosophically, you can think of these cells as wanting to live. And they’re gonna do whatever is necessary for them to live. So, you hit them with a medication that is rituximab, probably one of the better known ones. Rituximab hits a particular compound on the cell. And the loss of it, a lot of times, will cause the cell to be damaged and die.

Well, on the cell, and I’m a little on the smart side, I’m just not gonna make that marker on your cell. Or I’m going to put a hinge on it so that it breaks off, so that there’s minimal damage to me. And so, those kinds of things can and do happen to those cells. There is also the issue that, whether we like it or not, every day we go out and interact with something that’s gonna challenge ourselves or our genes in some way.

Three weeks ago, I went to the dermatologist with my husband, because he’s the one who has problems. We walked into this guy’s office and he said, “I’m taking you first. You have skin cancer.” “Excuse me?” That was a surprise to me. Well, how did that happen? It couldn’t have been because I’ve spent a lot of time outside without a hat on or anything like that, but I am not 22 years old. This took a long time for this to happen to me.

So, that’s a sense of a clonal evolution that occurs with repeated incidents of stress. And we all have that, every single day. Sometimes the only thing that happens is nothing. Sometimes you have to get your nose skinned to get stuff off.

And that’s what happens with these cells, as well. They will adapt because they want to live. We don’t, but they do. It is a matter—a contest to see who wins.

Andrew Schorr:

So, Justin, there you are in the lab. And as we come to the end of our program, I guess we wanna make clear, we talked about the whole picture, not just lab tests. But you’re looking at what could be tomorrow, okay. So, it sounds like there’s a pretty good pipeline of treatments of CLL should you have this clonal evolution, whether it’s 17p or something else, where you are gonna have something, please God, to bop it on its head again. How do you feel about it?

Dr. Taylor:

Yeah, we have good treatments now. We mentioned a few of them. I’ll just list some again. Ibrutinib (Imbruvica), venetoclax, idelalisib (Zydelig), obinutuzumab was mentioned, rituximab was mentioned, chemotherapy was mentioned. And so, we have a lot of tools and armamentarium in our pocket. But despite that, none of these are home runs, as it was put recently. So, we’re still trying to come up with other things and figuring out how to sequence them.

So, if you start off on Ibrutinib and then you can go to venetoclax, is that better? Or should we put the two together up front? And that was recently tested. We’re comparing these things and trying to figure out what’s the best way to give them in combination or sequentially to try to prevent this clonal evolution. And in the meantime, we’re coming up with more things to use in the future should these combinations not work.

Andrew Schorr:

Right. And you are. And I just wanna echo something that really the father of CLL study and treatment, Dr. Kanti Rai, talked to us about years ago, as we saw more of these tools you have come together, and you continue as, he said, to try to figure out how to arrange them.

It’s like arranging furniture in the room. There’s more furniture than ever before and you, Dr. Taylor, and your peers start to figure out how to arrange it, and people in laboratory science, Susan’s students, try to give you data to go along with the physical exam to get the whole picture of where that individual patient is. Did I get it right, Justin?

Dr. Taylor:

Perfect.

Andrew Schorr:

Okay. Susan, thank you so much for your devotion. What I get from you, always, is like what Granny Barb says, “Chill out.” You said, “Take a deep breath.” We’re on a long-term journey with CLL. And thank God we have a greater array of treatments. Are you hopeful for all of us, Susan?

Dr. Leclair:

Oh, I’m very hopeful. I think there will be a time when we will see the last person with CLL, just like we will see the last person with a lot of other ones. Look at yourself, Andrew, it’s the perfect example. Seventeen years ago you said, “Oh, God, what am I gonna do? I have to have therapy.” And you had the only therapy we had, and you got 17 years. And now when this happened, you said, “What am I gonna do?” And I said, “Have another 17 years.”

Andrew Schorr:

Right. Right, right. She did. And Esther and I just got back from Sweden, and we had a great time.

Dr. Leclair:

Oh, I’m sure.

Andrew Schorr:

I am so grateful to the medical community, the pharmaceutical community, the healthcare providers. I wanna thank the Patient Empowerment Network for putting this all together. I wanna thank AbbVie and Pharmacyclics for funding it. They had no control. Justin said what he was gonna say. I said what I was gonna say. Susan said what she was gonna say. Justin Taylor, thank you for being with us from New York in your lab. Go get ‘em, Justin.

Dr. Taylor:

Thank you.

Andrew Schorr:

Cure CLL, okay? Susan, thank you so much. You’re retired, but not really. You’re never retired for us, okay.

Dr. Leclair:

You told me I couldn’t.

Andrew Schorr:

No, you’re not allowed to retire. Okay. In Southern California, for Patient Power, but for the Patient Empowerment Network, I’m Andrew Schorr. Remember, knowledge can be the best medicine of all.


Please remember the opinions expressed on Patient Empowerment Network are not necessarily the views of our sponsors, contributors, partners or PEN. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Notable News: August 2018

The death of legendary singer Aretha Franklin received a lot of attention this month, but the cancer that killed her is in need of more awareness, say experts in a huffingtonpost.com article. The five year survival rate for pancreatic cancer is a very low eight percent. The disease often has no symptoms in the early stages, spreads early, is resistant to treatment, affects vital functions and, despite being thought of as rare, is increasing in frequency. However, there is some promising new research in the detection of pancreatic cancer (you’ll read about it in the next paragraph). Heightened awareness, funding, and research are needed to help combat this deadly disease. You can start by learning more here and, in case you missed it, you can find this month’s profile in which Alison Greenhill tells the story of her late husband’s experience with pancreatic cancer here.

The promising news is that a blood test could offer early screening for pancreatic and other cancers, according to research reported by dailymail.co.uk. In one study, scientists discovered that they can detect 95 percent of cancers through one blood test thanks to a protein produced by malaria parasites. When ten cancer cells were exposed to the protein, nine of them successfully attached to it. The test can also detect the cancers at any stage and help identify the aggressiveness of the disease. Among the cancers the test can detect are liver and pancreatic. Pancreatic cancer tends to have a low survival rate because it is often not found until the late stages of the disease. This blood test could allow for earlier detection. More can be learned about the potentially life-saving test here.

Another blood test has been found to detect melanoma with an 80 percent accuracy rate, says sciencealert.com. Caught early, the melanoma survival rate is 95 percent, but if it’s not detected early, chances for survival are below fifty percent. The test works by detecting antibodies that the body produces when melanoma forms. Currently, melanoma is detected through biopsies which are invasive and have a slightly lower accuracy rate than the blood test. The researchers hope to take the test to clinical trial and ultimately hope it will be used to detect the disease prior to biopsy in high-risk patients: those with fair skin, a lot of moles, and/or a family history of melanoma. More about this blood test can be found here. There is also a better way to determine which melanoma patients may benefit from immunotherapy. You can learn about that at axios.com here.

Another immunotherapy update comes from a recent study that may offer new insight into immunotherapy treatments, says geekwire.com. While immunotherapy has been a game-changer in treatment for many cancer patients, it doesn’t work at all for others and it can also come with some life-threatening side effects. Researchers set out to better understand the therapies and discovered how the components talk to each other in a process called signaling. It appears that the speed and strength of the signaling affect how the body responds to the treatment. It is the difference in the signaling that may help researchers find a way to reduce or eliminate the dangerous side effects and may also lead to making the treatments more effective. More information about this promising research can be found here.

As important as treatment is, keeping on top of when to be screened can be crucial to successful diagnosis and treatment. There are now more cervical cancer screening options for women aged 30 to 65, and you can learn about those at cnn.com here.

With all the positive research and advances in detection and treatment, it’s important to be aware that not all cancer patients have equal access to the best healthcare. It turns out that the disparities in minority health that we told you about here during National Minority Health month also apply to children. African American and Latino children are more likely to die from cancer, reports npr.org. Race and socio-economic status are factors. A comprehensive look at the research about the inequities in healthcare and survival rates for minority children can be found here.

Hopefully, the healthcare gap and survival rate can be narrowed because a new study shows that life is pretty good for most patients and survivors. The majority of current and former cancer patients who are 50 or older are happy, reports sciencedaily.com. The study showed that two-thirds of cancer patients fit the researchers description of complete mental health which was characterized by high levels of social and psychological well-being and being happy and/or satisfied with their daily lives. The cancer survivors were even happier with three-quarters of them meeting the complete mental health criteria. Learn more about this very happy study here.