Tag Archive for: immunotherapy

What Do You Need To Know About Waldenström Macroglobulinemia (WM)?

What Do You Need To Know About Waldenström Macroglobulinemia (WM)? from Patient Empowerment Network on Vimeo.

What should you or your loved ones know following a Waldenström macroglobulinemia (WM) diagnosis? This animated video reviews symptoms of WM, current treatment options and provides key advice for becoming a proactive WM patient.

See More From The Pro-Active Waldenström Macroglobulinemia Patient Toolkit

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Current Waldenström Macroglobulinemia Treatment Approaches

Current Waldenström Macroglobulinemia Treatment Approaches


Transcript:

Waldenström macroglobulinemia, also called Waldenström or WM, is a rare, slow-growing type of non-Hodgkin lymphoma that starts in a person’s white blood cells. Healthy blood cells are crowded out when the bone marrow produces too many malignant white blood cells, and these produce an excess of a protein called immunoglobulin M or IgM.  

Waldenström can cause symptoms that may include: 

  • Fatigue  
  • Unintended weight loss 
  • Fever 
  • Swollen lymph nodes 
  • Enlarged spleen 
  • Unexplained bleeding 
  • And numbness in the hands or feet, which is called peripheral neuropathy 

It’s important to note that not all patients with Waldenström have symptoms when they are diagnosed, and so those patients won’t need treatment immediately. Instead, they are put on an approach called “watchful waiting” or “active surveillance.” This means patients are monitored regularly for indicators that it is time to begin treatment – such as the onset of symptoms.  

So, how is Waldenström typically treated? 

Every patient is different. When making treatment decisions, factors such as the extent of disease and symptoms can impact available options. And potential side effects, a patient’s age, health, and lifestyle are also taken into consideration. 

The good news is that there are several treatment options for Waldenström, including: 

  • Chemotherapy  
  • Targeted therapies such as proteasome inhibitors, BTK inhibitors and BCL2 antagonists; 
  • Immunotherapy  
  • And, clinical trials, which study emerging treatments for Waldenström. It’s important to ask your doctor if there is a trial that may be right for you. 

Less commonly used treatments for Waldenström are stem cell transplant and radiation. 

In the case of hyperviscosity or other IgM-related symptoms, plasmapheresis, also known as plasma exchange, may be used as a temporary measure to manage the issue.    

Now that you understand more about Waldenström, how can you take an active role in your care?  

  • First, continue to educate yourself about your condition. 
  • Understand the goals of treatment and ask whether a clinical trial might be right for you.
  • It also important to consider a second opinion or consult with a specialist following a diagnosis.
  • And, write down your questions before and during your appointments. Visit powerfulpatients.org/wm to access office visit planners to help you organize your thoughts.
  • Bring one or more friends or loved ones to your appointments to help you recall information and to keep track of important details.
  • Finally, remember that you have a voice in your care. Don’t hesitate to ask questions and to share your concerns. You are your own best advocate. 

 To learn more about Waldenström macroglobulinemia and to access tools for self-advocacy, visit powerfulpatients.org/WM. 

Why Should Prostate Cancer Patients Partner in Care Decisions?

Why Should Prostate Cancer Patients Partner in Care Decisions? from Patient Empowerment Network on Vimeo.

Why should prostate cancer patients play an active role in their care decisions? Dr. Atish Choudhury explains the concept of shared decision-making and shares credible resources for patients.

Dr. Atish Choudhury is the Co-Director of the Prostate Cancer Center at Dana-Farber/Brigham & Women’s Cancer Center. Learn more about Dr. Choudhury here.

See More from Engage Prostate Cancer

Related Resources

What Is Prostate Cancer Palliative Care?

What Is Prostate Cancer Palliative Care?

How Is Advanced Prostate Cancer Treated?

How Is Advanced Prostate Cancer Treated?

When Should Prostate Cancer Patients Consider a Clinical Trial?

When Should Prostate Cancer Patients Consider a Clinical Trial?


Transcript:

Katherine:

I’d like to talk about the term “shared decision-making.” What does that mean to you, exactly? 

Dr. Choudhury:

So, shared decision-making really means that when the physician conveys information to a patient, that the patient really understands what’s being said, and what, really, the alternatives are – and the real risks and the benefits of the different alternatives. And so, if a patient goes to see a surgeon and they say, “Well, we should take this out,” and there’s never really discussion of what the risks and benefits of the alternatives are –and the alternatives could be just watching, or radiation, or even more intensive treatment, then that’s not really shared decision making. 

But what I think is not exactly shared decision making is when the patient is getting information from really non-knowledgeable or non-reputable sources and then starts to come up with conclusions based on hearsay or people trying to sell them a product that really hasn’t been FDA approved or really tested. And so, those are situations where when the information is really not good, then we can run into troubles with communications. But there are a lot of really excellent sources for patient information that’s available, and the Prostate Cancer Foundation is a really good source, and a lot of the academic prostate cancer centers are really great sources of information. 

And so, being educated and asking good questions is really the best way for a patient to feel comfortable that they’re not missing anything and that they’re, again, having all the information that they need to make a good choice for themselves. 

Katherine:

Do you have any advice to help patients speak up if they’re feeling like they’re not being heard?   

Dr. Choudhury:

Sure. So, I mean, there’s never any barrier to bringing up concerns with whoever that you’re seeing, and if you feel like whoever you’re talking to isn’t being receptive to those concerns, then certainly, second opinions are very useful. But if you see multiple doctors and they’re kind of telling you the same thing based on good evidence, then you probably have to take in what they’re saying, and process it, and see if it really does apply to your particular situation. 

But any cancer doctor who really has your self-interest in mind will be very open to discussing the concerns that you have, so you should absolutely bring them up. 

An Expert Debunks Advanced Prostate Cancer Myths

An Expert Debunks Advanced Prostate Cancer Myths from Patient Empowerment Network on Vimeo.

Dr. Atish Choudhury debunks common myths about advanced prostate cancer, including concerns about genetics, treatment, and side effects.

Dr. Atish Choudhury is the Co-Director of the Prostate Cancer Center at Dana-Farber/Brigham & Women’s Cancer Center. Learn more about Dr. Choudhury here.

See More from Engage Prostate Cancer

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What Is Prostate Cancer Palliative Care?

What Is Prostate Cancer Palliative Care?

How Is Advanced Prostate Cancer Treated?

How Is Advanced Prostate Cancer Treated?

When Should Prostate Cancer Patients Consider a Clinical Trial?

When Should Prostate Cancer Patients Consider a Clinical Trial?


Transcript:

Katherine:                  

I’d like to address a list of common concerns about treatment that we’ve heard from the community. So, I’d love to get your take on these. “There’s nothing that can be done about advanced prostate cancer.” Is that true?

Dr. Choudhury:           

So, that is very much untrue in that even patients with pretty advanced prostate cancer – even what we call “high-volume” kinds of prostate cancer – can live for years, and years, and years with appropriate treatments.

And the concern, oftentimes, is that the way that we get those years, and years, and years are with treatments that lower levels of testosterone, and I’m guessing that some of your questions coming up are related to concerns around side effects of treatment. But many of our patients tolerate those side effects pretty well and can live quite a good, and vigorous, and fulfilling life even with pretty advanced prostate cancer.

Katherine:                  

The next one: “Clinical trials are a last-resort treatment option.”

Dr. Choudhury:   

Yeah, so, as I’d mentioned before, clinical trials can be appropriate anywhere along the treatment trajectory of prostate cancer, and they are often being compared against standards which are often pretty good, but can we make them better? And certainly, participating in clinical trials isn’t for everyone, but for a long of our patients who are interested in seeing if an experimental approach might be beneficial to them or contributing some knowledge to patients down the line really do find trial participation to be quite fulfilling.

Katherine:                  

All right. The next one is: “Prostate cancer isn’t genetic, so I don’t need to be tested.” Is that the case?

Dr. Choudhury:        

No. So, it turns out that prostate cancer is actually one of our most heritable cancers. Somewhere between 40% and 50% of the predisposition to prostate cancer is actually genetic, or inherited based on family. So, the part that’s tricky and the part that is hard to maybe explain to patients is that a lot of that heritability is not encompassed in particular cancer genes in the way that many people are familiar with with breast and ovarian cancers, which are often linked to genes called “BRCA-1” and “BRCA-2.” So, a small subset of patients with prostate cancer do have alterations in that BRCA-2 gene, or BRCA-1, or ATM, or some other genes involved in breast and ovarian cancers.

And that does impact, potentially, their treatments down the line, and certainly is impactful for themselves, their siblings, their children as far as, potentially, screening recommendations for other cancers. But oftentimes, we’ll do one of these tests in patients who have a pretty extensive family history of prostate cancer, and they come out negative, and the patient is very confused because they clearly have a family history, but it’s because not all the risk of prostate cancer is actually encompassed in these gene tests that we run.

Katherine:                  

Ah, okay. The next concern is “I’ll lose all sexual function when I receive treatment.”

Dr. Choudhury:         

So, it very much depends exactly what the treatment is, and what’s being offered, and what the recovery is like.

So, for example, for patients who go into a prostatectomy and have very good erectile function, it’s not inevitable that you’ll lose your sexual functioning after a prostatectomy. There is a process – we kind of refer to it as “penile rehab” – of using medications like a Viagra or Sialis to restore the blood flow. You could use certain things like vacuum pump devices to restore the blood flow, and again, it’s not inevitable that people are going to lose their sexual functioning after a prostatectomy.

Even with testosterone suppression, while it plays a role in libido and erectile function, it’s not inevitable that people lose their libido and erectile function completely, even on these drugs. But certainly, more often than not, people will lose their erectile function on testosterone-lowering medications.

And so, there are alternative ways to get erections – involving, again, use of vacuum pump devices or injections that people can give themselves into the penis. People can have penile implant surgery to be able to get erections that way. And so, it’s really dependent on what the situation is.

Again, none of those more mechanical interventions are really ideal, but particularly when people have a defined course of treatment – for example, a surgery or radiation with a brief course of hormones – people can recover erectile function even after those sorts of interventions. And if they can’t, then we do have other approaches that will allow people to still be able to be sexually intimate with their partner after all of the treatments are completed.

Katherine:                  

Dr. Choudhury, one more concern: “My symptoms and side effects can’t be managed.”

Dr. Choudhury:           

Yeah. So, again, it’s very rare that we run into situations where there are side effects or symptoms that can’t be managed at all, in the sense that we have very effective medications against hot flashes, or moodiness, or pain, or –just fatigue. And certainly, lifestyle plays a big role in this. Also, a lot of the symptoms that people express are related to underlying depression and anxiety issues, and certainly, engaging with a mental health provider can be helpful in terms of managing those as well.

And then, there’s a lot of nonpharmacologic treatments – meaning nonmedication approaches that can provide people a lot of benefit in terms of their quality of life, and we have an integrative center called the Zakim Center for Integrative Medicine that helps with the relaxation techniques, and massage, and yoga, and acupuncture…

And people find different approaches to help manage these symptoms and side effects. And so, it’s very unusual where we run into a situation where the side effects are unbearable and unmanageable. Usually, we can manage them in some form of way that allow people to have, again, a good quality of life and a meaningful life, even on prostate cancer treatment.

Which Factors Impact Advanced Prostate Cancer Treatment Decisions?

Which Factors Impact Advanced Prostate Cancer Treatment Decisions? from Patient Empowerment Network on Vimeo.

Once treatment goals are defined, what else goes into making an advanced prostate cancer treatment decision? Dr. Atish Choudhury reviews factors that affect options.

Dr. Atish Choudhury is the Co-Director of the Prostate Cancer Center at Dana-Farber/Brigham & Women’s Cancer Center.
Learn more about Dr. Choudhury here.

See More from Engage Prostate Cancer

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Why Should Prostate Cancer Patients Partner in Care Decisions?

Why Should Prostate Cancer Patients Partner in Care Decisions?

Who Are the Members of a Prostate Cancer Care Team?

Who Are the Members of a Prostate Cancer Care Team?

An Expert Debunks Advanced Prostate Cancer Myths

An Expert Debunks Advanced Prostate Cancer Myths


Transcript:

Katherine:

Let’s start by understanding the goals of treatment. What are the goals of advanced stage prostate cancer? 

Dr. Choudhury: 

So, in general, the goal of treating any cancer is to a live a long, happy, healthy life with limited quality of life troubles from the cancer itself or its treatments. And so, for localized prostate cancer, that generally means treating with curative intent – that we give radiation or surgery, potentially in combination with hormonal treatments so that the cancer is taken care of and people can be cured and not need further treatments moving forward at all. 

And there are situations, even in fairly advanced cases, where that’s a reasonable and accomplishable goal. And there are other situations that we might not be able to cure the cancer completely, but the treatments can be quite effective at keeping it under control and keep people with a very good quality of life so that prostate cancer is not a day-to-day burden for them and that they can survive with cancer for years, and years, and years.   

Katherine:

What do you typically consider when determining the best treatment approach or option for a patient? 

Dr. Choudhury:

So, the starting point and the ending point is the patient themselves. And so, “the patient” means “What is their age? What is their fitness level? What are their activities? What’s the overall life expectancy? What are there other medical issues?” And then, we consider the cancer – “What is the stage? What is the grade? Where has it spread to, if it’s spread?” 

And then, we try to incorporate all of those pieces with data – with clinical trials that have already been reported – and we have a lot of data in prostate cancer from patients who’ve participated in clinical trials, often randomized to one approach versus another, that gives us a sense of “What are the approaches that really benefit patients in terms of increasing likelihood of cure or prolonging the survival?” 

And so, once we incorporate all of those things, we can come up with some treatment suggestions, and then patient preference on those suggestions obviously plays a very important role. But sometimes, we start down a line, and the patient is having troublesome side effects or it’s not working as well as we’d really hoped, and it’s important to be adaptive and to change things if things are not going down a route that we’d really hoped. So, that’s an ongoing conversation. It’s not that you make a treatment plan at the first visit and that’s the plan that’s stuck with throughout the whole course of things. 

It’s a conversation at every visit on how things are going in terms of how the patients are doing and how the cancer is responding. And then, again, try to manage side effects as well as we can and adjust things if we need to along the way – and maybe switch to something that’s potentially going to be better tolerated or more effective, depending on what we see. 

Katherine:

Right. It sounds like there are many factors to weigh when making this decision.  

When Should Prostate Cancer Patients Consider a Clinical Trial?

When Should Prostate Cancer Patients Consider a Clinical Trial? from Patient Empowerment Network on Vimeo.

When should patients consider a clinical trial? Dr. Atish Choudhury explains the benefits of trial participation, how to get involved, and discusses emerging approaches in cancer treatment.

Dr. Atish Choudhury is the Co-Director of the Prostate Cancer Center at Dana-Farber/Brigham & Women’s Cancer Center.
Learn more about Dr. Choudhury here.

See More from Engage Prostate Cancer

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Why Should Prostate Cancer Patients Partner in Care Decisions?

Why Should Prostate Cancer Patients Partner in Care Decisions?

Which Factors Impact Advanced Prostate Cancer Treatment Decisions?

Which Factors Impact Advanced Prostate Cancer Treatment Decisions?

An Expert Debunks Advanced Prostate Cancer Myths

An Expert Debunks Advanced Prostate Cancer Myths


Transcript:

Katherine:                  

Where do clinical trials fit in?

Dr. Choudhury:       

So, clinical trials can fit in anywhere along the treatment trajectory for prostate cancer. It’s not something that’s reserved for kind of late-stage disease. So, for example, for people with localized disease, there are different types of treatment strategies that might be available to maybe enhance the activity of the surgery or the radiation that’s planned. And so, we might consider a clinical trial even for localized prostate cancer.

And then, anywhere along the way, there are standard treatments that are available, and then, there are some experimental approaches that might be available. And the experimental approaches might be to add an additional drug to the standard or to actually – what we call “deescalate treatment” – give a little bit less of the medication and see if the outcomes are the same. And these are tests.

And so, the control arm, when there’s a randomized trial, is generally considered a standard of care. And then, the experimental arm is some alteration or deviation from that standard. But many of our trials are also single-arm trials where we’re testing some experimental regimen that all patients who participate in the trial will take part in, and it’s really important for the patient to ask, “What are the clinical trials available?” “What are the alternatives as far as standard treatments?” and “Are there other clinical trials other than the one that’s being discussed,” that might be appropriate for them?

Katherine:                  

Are there emerging approaches that patients should know about?   

Dr. Choudhury:        

Yeah. So, a lot of the emerging approaches are related to the genetics of the prostate cancer, as I just mentioned. And then, these different forms of radiation drugs – in addition to the ones that have already demonstrated survival advantage, there are other ones in the pipeline. And then, one thing that patients are very curious about is immune therapy approaches to prostate cancer.

Now, the standard kind of immune therapy drugs that are approved for lung cancer, and melanoma, and kidney cancers don’t tend to work particular well for prostate cancer. But there are many clinical trials trying to combine those kinds of drugs with other drugs or have newer approaches to immune therapies that patients with advanced cancer can certainly ask about.

Again, all of this is really experimental, and people need to understand that these sorts of approaches aren’t going to help everyone. But participating in a clinical trial allows our patients to contribute to knowledge that can be useful for other patients down the line.

How Is Advanced Prostate Cancer Treated?

How Is Advanced Prostate Cancer Treated? from Patient Empowerment Network on Vimeo.

What therapies are available to treat advanced prostate cancer? Expert Dr. Atish Choudhury reviews current treatment options.

Dr. Atish Choudhury is the Co-Director of the Prostate Cancer Center at Dana-Farber/Brigham & Women’s Cancer Center.
Learn more about Dr. Choudhury here.

See More from Engage Prostate Cancer

Related Resources

When Should Prostate Cancer Patients Consider a Clinical Trial?

When Should Prostate Cancer Patients Consider a Clinical Trial?

Which Factors Impact Advanced Prostate Cancer Treatment Decisions?

Which Factors Impact Advanced Prostate Cancer Treatment Decisions?

An Expert Debunks Advanced Prostate Cancer Myths

An Expert Debunks Advanced Prostate Cancer Myths


Transcript:

Katherine:                  

So, let’s walk through the types of therapy that are used today to treat prostate cancer. If you would start with surgery?

Dr. Choudhury:            

Sure. So, surgery is a radical prostatectomy, and they take out the prostate – they take out neighboring structures called seminal vesicles, they take out the surrounding fat, and they’ll usually take out some neighboring lymph nodes as well. And there are advantages of surgery in that when the prostate is out, the pathologist can examine the whole prostate front to back, side to side, as well as those neighboring structures to really understand the stage of the cancer – “Where is it?” – and also, the grade – “Is it a high-grade cancer, a low-grade cancer, somewhere in the middle?”

And it really helps guide “What is the risk of developing recurrence afterwards, and are there further treatments that we should be giving after the surgery? For example, radiation to the prostate bed to decrease the risk of recurrences. Surgery does have its own set of potential side effects and complications, so it’s not appropriate for everyone, but in general, that’s the process.

Katherine:                  

What other treatment options? You mentioned radiation. What else is there?         

Dr. Choudhury:          

Yeah, so, radiation comes in two forms: there’s seed radiation, which is implantable little radioactive pellets that are implanted throughout the prostate. And then, there’s external radiation, and that can be given in several forms and over several schedules that it’s really important to discuss with the care team.

The other forms of treatment that people on this call might’ve heard about or read about are in a category called “focal treatments,” and these are basically ways to – and the term we use is a blade but zap – an area of the prostate using lasers, or high-intensity ultrasound, or with freezing an area of the prostate, or with something called “irreversible electroporation.”

These are basically all ways to, again, zap an area of the prostate either with heat or with cold with the intention of killing off cancer cells in an area. And the trouble is that none of these treatments have actually been demonstrated to improve outcomes related to prostate cancer compared to just surveillance alone. And it does complicate, sort of, the monitoring afterwards to see if something has come back.

But there might be very selected patients where there’s an area of cancer that’s seen on a scan – like an MRI – with no cancer seen outside of that area who might decide to pursue this possibility of focal treatment with the goal of maybe putting off the need for something like radiation or surgery. But that’s something that really should be discussed with a multidisciplinary team so that people really understand what they’re getting into in terms of risks and potential benefits.

So, those treatments are not really considered standard at this time.

Katherine:                  

What about hormonal therapy?        

Dr. Choudhury:   

Yeah, so, hormonal therapy plays a role in the treatment of prostate cancer, really depending on the stage and the other treatments that are being considered. So, for example, if a patient is going to surgery for a localized prostate cancer, in general, we wouldn’t use hormonal treatment either before or after the surgery unless they’re planned for radiation after the surgery.

However, for patients who have intermediate risk or higher localized prostate cancer and are getting radiation, then we will often recommend hormonal treatments, which are basically testosterone-lowering drugs, to make the radiation work as well as possible. And then, for patients who have advanced cancer beyond where surgery or radiation is going to be of help, then, hormonal treatments are important to treat the cancer wherever it is.

And that’s because prostate cancer cells, wherever they are in the body – wherever they’re in the prostate itself, or in lymph nodes, or bones, or other organs – depend on the testosterone in your body to supply a fuel – to support its growth and survival.

And so, lowering the level of testosterone in the body basically deprives the cancer cells of that fuel and starts a process of killing cancer cells even without any need for radiation, or chemotherapy, or things like that. However, hormonal treatments are not curative. They don’t kill all the cancer – they kill some and put the rest to sleep. And so, if you stop the hormonal treatment, the cancer will grow back, and that’s why it’s not a treatment on its own for localized prostate cancer.

And that’s also why, for prostate cancer that’s spread, we often add on additional medications to the testosterone-lowering drugs to be more effective at really killing the cancer wherever it is compared to the testosterone suppression alone.

Katherine:                  

Oh, I see. For advanced disease, what treatments are available for patients that are hormone-sensitive or -resistant?

Dr. Choudhury:           

Yeah, so “hormone-sensitive” means that the cancer has advanced, but the patient hasn’t started on testosterone-lowering drugs yet. And so, as I had mentioned, testosterone lowering is really the backbone of treatment of these patients. And so, there are additional treatments that have been demonstrated previously to be effective after testosterone-lowering by itself stops working, and these include a chemotherapy drug called docetaxel. And in addition, there are more potent hormonal drugs called abiraterone, enzalutamide, apalutamide, and darolutamide.

And the role of these other drugs is to block hormonal signaling within the cancer cells from hormones other than testosterone. And so, by doing the more potent hormonal drug in conjunction with the testosterone lowering, that leads to a much deeper response – much more tumor shrinkage – and, it turns out, also prolonged survival in patients treated with those combination treatments – compared top people who are treated with testosterone lowering alone and then receive these drugs later.

So, there’s something about treating more aggressively at the beginning in this hormone-sensitive state that plays out in prolongation of survival. And not only prolonged survival, but improved quality of life due to delaying the symptoms of cancer grown and progression.

Katherine:                  

Right.        

Dr. Choudhury:   

When we then talk about castration resistant disease, certainly we use the same classes of drugs, but then, there’s a wider armamentarium of things that we use that include, again, other kinds of chemotherapy.

There are radiation drugs, and an approved drug Radium-223. And there’s another drug on the horizon called Lutetium PSMA. There are immune therapy drugs – something called Sipuleucel-T – and then, this is also a situation where we do genetic testing of the cancer to understand if there’re certain –what we call “therapeutic vulnerabilities.”

Other treatment options that are available based on the genetics of the cancer that might be helpful in some people? And specific options include a chemo-immune therapy called “Keytruda” in a small subset of patients with particular genetic changes involving genes involved in mismatched repair of DNA. And then, there’s another set of targeted treatments called “PARP inhibitors” for certain sets of patients who have alterations in genes involved in homologous recombination repair of DNA.

So, that’s all very complicated, and so that’s why it’s important to get treated with high-volume providers of prostate cancer patients so that they’re really aware and onboard with these various treatment options that are available.

What Is Prostate Cancer Palliative Care?

What Is Prostate Cancer Palliative Care? from Patient Empowerment Network on Vimeo.

What is palliative care? Dr. Atish Choudhury discusses what palliative care involves for advanced prostate cancer patients.

Dr. Atish Choudhury is the Co-Director of the Prostate Cancer Center at Dana-Farber/Brigham & Women’s Cancer Center. Learn more about Dr. Choudhury here.

See More from Engage Prostate Cancer

Related Resources

Who Are the Members of a Prostate Cancer Care Team?

Who Are the Members of a Prostate Cancer Care Team?

An Expert Debunks Advanced Prostate Cancer Myths

An Expert Debunks Advanced Prostate Cancer Myths

Which Factors Impact Advanced Prostate Cancer Treatment Decisions?

Which Factors Impact Advanced Prostate Cancer Treatment Decisions?


Transcript:

Katherine:                  

Dr. Choudhury, we received this question from an audience member prior to the program: What is palliative care?

Dr. Choudhury:           

So, palliative care is really a branch of medicine that helps with symptom management. And so, that symptom management doesn’t necessarily have to be end-of-life sort of symptoms relating to death and dying. It can be just along the way to help with managing the symptoms related to cancer and its treatment, but also to be kind of another medical provider to help with communication of goals of care – what’s really bothersome, what’s really important – so that we kind of incorporate those wishes and desires into the management decisions that we make.

So, a patient does not have to be at end-of-life to engage with palliative care. Certainly, even earlier engagement with palliative care can be helpful to maximize quality of life along the treatment journey. But as symptoms become more bothersome, certainly, our palliative care colleagues can be incredibly helpful – not just in helping manage pain, but also nausea, also depression and psychological side effects. So, they’re a really critical part of our treatment team.

Who Are the Members of a Prostate Cancer Care Team?

Who Are the Members of a Prostate Cancer Care Team? from Patient Empowerment Network on Vimeo.

Prostate cancer expert Dr. Atish Choudhury explains which experts comprise a prostate cancer care team. Dr. Choudhury encourages patients to take an active role as a member of their care team.

Dr. Atish Choudhury is the Co-Director of the Prostate Cancer Center at Dana-Farber/Brigham & Women’s Cancer Center. Learn more about Dr. Choudhury here.

See More from Engage Prostate Cancer

Related Resources

What Is Prostate Cancer Palliative Care?

What Is Prostate Cancer Palliative Care?

How Is Advanced Prostate Cancer Treated?

How Is Advanced Prostate Cancer Treated?

Which Factors Impact Advanced Prostate Cancer Treatment Decisions?

Which Factors Impact Advanced Prostate Cancer Treatment Decisions?


Transcript:

Katherine:                  

So, who is typically on a patient’s prostate cancer healthcare team?

Dr. Choudhury:            

Yeah. So, generally, the consultations here at Dana-Farber are multidisciplinary, with a medical oncologist, a radiation oncologist, and a urologic oncologist – so, a surgeon.

And so, if a patient is a good candidate for treatment to the prostate itself, then certainly, the surgeon and the radiation oncologist will talk about those treatments. And if the treatment is primarily with medications, then the medical oncologist will generally sort of take the lead. But there is often a role for local treatment to the prostate itself, even in cancer that’s spread beyond the prostate. So, that’s why the multidisciplinary consultation is so important.

Katherine:                  

Right. What do you feel is the patient’s role as a team member?

Dr. Choudhury:           

Absolutely. So, I think it is very important for the patient to make sure that they come into these multidisciplinary meetings with questions around “What is my stage?” “What are the choices?” “What do I expect with treatment? Without treatment? With the various treatment options?” And basically, to take in the advice that they’re getting from the different members of the multidisciplinary team, and really think about how that’s impactful for them and their goals for themselves and what they really hope for the short term and for the long term.

I think what gets tricky is that there’s really very not-great sources of information that’s out there online and in YouTube videos and things like that, and I think it does play an important role for the patient to really understand what are the real high-quality sources of information – they tend to come from academic medical centers like ours. And certainly, we do encourage second opinions at other high-quality, high-volume centers so that the patients understand that the recommendations that are being made are generally made based on the based data and with people with a lot of experience at treating their kind of cancer.

Katherine:                  

What about caregivers? How do they fit into the team?

Dr. Choudhury:             

Caregivers are critical because patients are not always the most expressive at, really, what their wants, and needs, and desires are. And especially when they’re on treatment, sometimes they’re not so expressive around the things that are bothering them on a day-to-day basis.

So, the caregivers are really important for communication with us to be kind of another set of eyes and ears in terms of kind of reporting what the patient’s symptoms are or what their goals or desires are that maybe they themselves don’t feel comfortable expressing. But they also play an important role in helping us with, kind of, lifestyle recommendations to the patient. Because certainly, much of the process of doing well with prostate cancer treatments is kind of lifestyle modifications – makes sure you’re eating healthy, exercising regularly – and the caregivers can play a very important role in making sure that patients stick to that kind of regimen as well.    

Katherine:                  

I would think one of the issues for a patient too is that just having a cancer can be overwhelming and can make it difficult for them to even remember all the questions and concerns that they have.

Dr. Choudhury:            

Yeah, that’s absolutely critical, and the caregivers play a very important role. So, often, people who are not partnered, for example, will just bring a friend to these appointments just to be that second set of eyes and ears.

How to Play an Active Role in Your Prostate Cancer Treatment and Care Decisions

How to Play an Active Role in Your Prostate Cancer Treatment and Care Decisions from Patient Empowerment Network on Vimeo.

What steps can you take to engage in your prostate cancer treatment and care decisions? Dr. Atish Choudhury discusses current and emerging prostate cancer therapies, reviews key treatment decision-making factors, and shares advice for self-advocacy.

Dr. Atish Choudhury is the Co-Director of the Prostate Cancer Center at Dana-Farber/Brigham & Women’s Cancer Center.
Learn more about Dr. Choudhury here.

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Key Considerations When Making Prostate Cancer Treatment Decisions

Key Considerations When Making Prostate Cancer Treatment Decisions

prostate cancer treatment decisions

Using Your Voice to Partner in Your Prostate Cancer Treatment Decisions


Transcript:

Katherine:                  

Hello, and welcome. I’m Katherine Banwell, your host for today’s webinar. Today, we’re going to explore the goals of advanced prostate cancer treatment and discuss tools for playing an active role in your care decisions.

Before we get into the discussion, please remember that this program is not a substitute for seeking medical advice. Please refer to your healthcare team about what might be best for you. Joining us today is Dr. Atish Choudhury. Dr. Choudhury, welcome. Would you please introduce yourself?

Dr. Choudhury:        

Hello. Thank you so much for the invitation. So, I’m a medical oncologist at Dana-Farber Cancer Institute, and I’m the codirector of the prostate cancer center at the Dana-Farber/Brigham and Women’s Cancer Center. And I serve as the chair of the Lank Center for Translational Research as well, and ’t’s my pleasure to be here.

Katherine:                  

Thank you so much for taking the time out of your schedule to join us. Today, we’re talking about advanced prostate cancer.

What exactly does “advanced” mean in terms of this cancer?

Dr. Choudhury:          

Yeah. So, it’s actually a pretty broad term, and it can mean different things in different contexts. But generally, what it means is that it’s cancer that has extended outside of the confines of the boundaries of the prostate itself – either locally where it is into the surrounding fat around the prostate capsule or to local lymph nodes, where it could also spread to other parts of the body – like lymph nodes, bone, and other organs.

So, it can really mean different things depending on the context.

Katherine:                  

Before we get into the types of treatment available, let’s start by understanding the goals of treatment. What are the goals of advanced stage prostate cancer?

Dr. Choudhury:              

So, in general, the goal of treating any cancer is to a live a long, happy, healthy life with limited quality of life troubles from the cancer itself or its treatments. And so, for localized prostate cancer, that generally means treating with curative intent – that we give radiation or surgery, potentially in combination with hormonal treatments so that the cancer is taken care of and people can be cured and not need further treatments moving forward at all.

And there are situations, even in fairly advanced cases, where that’s a reasonable and accomplishable goal. And there are other situations that we might not be able to cure the cancer completely, but the treatments can be quite effective at keeping it under control and keep people with a very good quality of life so that prostate cancer is not a day-to-day burden for them and that they can survive with cancer for years, and years, and years.

Katherine:                  

It sounds like these goals would be determined with members of your healthcare team. So, who is typically on a patient’s prostate cancer healthcare team?

Dr. Choudhury:            

Yeah. So, generally, the consultations here at Dana-Farber are multidisciplinary, with a medical oncologist, a radiation oncologist, and a urologic oncologist – so, a surgeon.

And so, if a patient is a good candidate for treatment to the prostate itself, then certainly, the surgeon and the radiation oncologist will talk about those treatments. And if the treatment is primarily with medications, then the medical oncologist will generally sort of take the lead. But there is often a role for local treatment to the prostate itself, even in cancer that’s spread beyond the prostate. So, that’s why the multidisciplinary consultation is so important.

Katherine:                  

Right. What do you feel is the patient’s role as a team member?

Dr. Choudhury:           

Absolutely. So, I think it is very important for the patient to make sure that they come into these multidisciplinary meetings with questions around “What is my stage?” “What are the choices?” “What do I expect with treatment? Without treatment? With the various treatment options?” And basically, to take in the advice that they’re getting from the different members of the multidisciplinary team, and really think about how that’s impactful for them and their goals for themselves and what they really hope for the short term and for the long term.

I think what gets tricky is that there’s really very not-great sources of information that’s out there online and in YouTube videos and things like that, and I think it does play an important role for the patient to really understand what are the real high-quality sources of information – they tend to come from academic medical centers like ours. And certainly, we do encourage second opinions at other high-quality, high-volume centers so that the patients understand that the recommendations that are being made are generally made based on the based data and with people with a lot of experience at treating their kind of cancer.

Katherine:                  

What about caregivers? How do they fit into the team?

Dr. Choudhury:             

Caregivers are critical because patients are not always the most expressive at, really, what their wants, and needs, and desires are. And especially when they’re on treatment, sometimes they’re not so expressive around the things that are bothering them on a day-to-day basis.

So, the caregivers are really important for communication with us to be kind of another set of eyes and ears in terms of kind of reporting what the patient’s symptoms are or what their goals or desires are that maybe they themselves don’t feel comfortable expressing. But they also play an important role in helping us with, kind of, lifestyle recommendations to the patient. Because certainly, much of the process of doing well with prostate cancer treatments is kind of lifestyle modifications – makes sure you’re eating healthy, exercising regularly – and the caregivers can play a very important role in making sure that patients stick to that kind of regimen as well.    

Katherine:                  

I would think one of the issues for a patient too is that just having a cancer can be overwhelming and can make it difficult for them to even remember all the questions and concerns that they have.

Dr. Choudhury:            

Yeah, that’s absolutely critical, and the caregivers play a very important role. So, often, people who are not partnered, for example, will just bring a friend to these appointments just to be that second set of eyes and ears.

Katherine:                  

Dr. Choudhury, we received this question from an audience member prior to the program: What is palliative care?

Dr. Choudhury:           

So, palliative care is really a branch of medicine that helps with symptom management. And so, that symptom management doesn’t necessarily have to be end-of-life sort of symptoms relating to death and dying. It can be just along the way to help with managing the symptoms related to cancer and its treatment, but also to be kind of another medical provider to help with communication of goals of care – what’s really bothersome, what’s really important – so that we kind of incorporate those wishes and desires into the management decisions that we make.

So, a patient does not have to be at end-of-life to engage with palliative care. Certainly, even earlier engagement with palliative care can be helpful to maximize quality of life along the treatment journey. But as symptoms become more bothersome, certainly, our palliative care colleagues can be incredibly helpful – not just in helping manage pain, but also nausea, also depression and psychological side effects. So, they’re a really critical part of our treatment team.

Katherine:                  

Yeah. I think we have a pretty good understanding and the goals of treatment. So, let’s walk through the types of therapy that are used today to treat prostate cancer.

If you would start with surgery?

Dr. Choudhury:            

Sure. So, surgery is a radical prostatectomy, and they take out the prostate – they take out neighboring structures called seminal vesicles, they take out the surrounding fat, and they’ll usually take out some neighboring lymph nodes as well. And there are advantages of surgery in that when the prostate is out, the pathologist can examine the whole prostate front to back, side to side, as well as those neighboring structures to really understand the stage of the cancer – “Where is it?” – and also, the grade – “Is it a high-grade cancer, a low-grade cancer, somewhere in the middle?”

And it really helps guide “What is the risk of developing recurrence afterwards, and are there further treatments that we should be giving after the surgery? For example, radiation to the prostate bed to decrease the risk of recurrences. Surgery does have its own set of potential side effects and complications, so it’s not appropriate for everyone, but in general, that’s the process.

Katherine:                  

What other treatment options? You mentioned radiation. What else is there?         

Dr. Choudhury:          

Yeah, so, radiation comes in two forms: there’s seed radiation, which is implantable little radioactive pellets that are implanted throughout the prostate. And then, there’s external radiation, and that can be given in several forms and over several schedules that it’s really important to discuss with the care team.

The other forms of treatment that people on this call might’ve heard about or read about are in a category called “focal treatments,” and these are basically ways to – and the term we use is a blade but zap – an area of the prostate using lasers, or high-intensity ultrasound, or with freezing an area of the prostate, or with something called “irreversible electroporation.”

These are basically all ways to, again, zap an area of the prostate either with heat or with cold with the intention of killing off cancer cells in an area. And the trouble is that none of these treatments have actually been demonstrated to improve outcomes related to prostate cancer compared to just surveillance alone. And it does complicate, sort of, the monitoring afterwards to see if something has come back.

But there might be very selected patients where there’s an area of cancer that’s seen on a scan – like an MRI – with no cancer seen outside of that area who might decide to pursue this possibility of focal treatment with the goal of maybe putting off the need for something like radiation or surgery. But that’s something that really should be discussed with a multidisciplinary team so that people really understand what they’re getting into in terms of risks and potential benefits.

So, those treatments are not really considered standard at this time.

Katherine:                  

What about hormonal therapy?        

Dr. Choudhury:   

Yeah, so, hormonal therapy plays a role in the treatment of prostate cancer, really depending on the stage and the other treatments that are being considered. So, for example, if a patient is going to surgery for a localized prostate cancer, in general, we wouldn’t use hormonal treatment either before or after the surgery unless they’re planned for radiation after the surgery.

However, for patients who have intermediate risk or higher localized prostate cancer and are getting radiation, then we will often recommend hormonal treatments, which are basically testosterone-lowering drugs, to make the radiation work as well as possible. And then, for patients who have advanced cancer beyond where surgery or radiation is going to be of help, then, hormonal treatments are important to treat the cancer wherever it is.

And that’s because prostate cancer cells, wherever they are in the body – wherever they’re in the prostate itself, or in lymph nodes, or bones, or other organs – depend on the testosterone in your body to supply a fuel – to support its growth and survival.

And so, lowering the level of testosterone in the body basically deprives the cancer cells of that fuel and starts a process of killing cancer cells even without any need for radiation, or chemotherapy, or things like that. However, hormonal treatments are not curative. They don’t kill all the cancer – they kill some and put the rest to sleep. And so, if you stop the hormonal treatment, the cancer will grow back, and that’s why it’s not a treatment on its own for localized prostate cancer.

And that’s also why, for prostate cancer that’s spread, we often add on additional medications to the testosterone-lowering drugs to be more effective at really killing the cancer wherever it is compared to the testosterone suppression alone.

Katherine:                  

Oh, I see. For advanced disease, what treatments are available for patients that are hormone-sensitive or -resistant?

Dr. Choudhury:           

Yeah, so “hormone-sensitive” means that the cancer has advanced, but the patient hasn’t started on testosterone-lowering drugs yet. And so, as I had mentioned, testosterone lowering is really the backbone of treatment of these patients. And so, there are additional treatments that have been demonstrated previously to be effective after testosterone-lowering by itself stops working, and these include a chemotherapy drug called docetaxel. And in addition, there are more potent hormonal drugs called abiraterone, enzalutamide, apalutamide, and darolutamide.

And the role of these other drugs is to block hormonal signaling within the cancer cells from hormones other than testosterone. And so, by doing the more potent hormonal drug in conjunction with the testosterone lowering, that leads to a much deeper response – much more tumor shrinkage – and, it turns out, also prolonged survival in patients treated with those combination treatments – compared top people who are treated with testosterone lowering alone and then receive these drugs later.

So, there’s something about treating more aggressively at the beginning in this hormone-sensitive state that plays out in prolongation of survival. And not only prolonged survival, but improved quality of life due to delaying the symptoms of cancer grown and progression.

Katherine:                  

Right.        

Dr. Choudhury:   

When we then talk about castration resistant disease, certainly we use the same classes of drugs, but then, there’s a wider armamentarium of things that we use that include, again, other kinds of chemotherapy.

There are radiation drugs, and an approved drug Radium-223. And there’s another drug on the horizon called Lutetium PSMA. There are immune therapy drugs – something called Sipuleucel-T – and then, this is also a situation where we do genetic testing of the cancer to understand if there’re certain –what we call “therapeutic vulnerabilities.”

Other treatment options that are available based on the genetics of the cancer that might be helpful in some people? And specific options include a chemo-immune therapy called “Keytruda” in a small subset of patients with particular genetic changes involving genes involved in mismatched repair of DNA. And then, there’s another set of targeted treatments called “PARP inhibitors” for certain sets of patients who have alterations in genes involved in homologous recombination repair of DNA.

So, that’s all very complicated, and so that’s why it’s important to get treated with high-volume providers of prostate cancer patients so that they’re really aware and onboard with these various treatment options that are available.

Katherine:                  

Yeah. Where do clinical trials fit in?

Dr. Choudhury:       

So, clinical trials can fit in anywhere along the treatment trajectory for prostate cancer. It’s not something that’s reserved for kind of late-stage disease. So, for example, for people with localized disease, there are different types of treatment strategies that might be available to maybe enhance the activity of the surgery or the radiation that’s planned. And so, we might consider a clinical trial even for localized prostate cancer.

And then, anywhere along the way, there are standard treatments that are available, and then, there are some experimental approaches that might be available. And the experimental approaches might be to add an additional drug to the standard or to actually – what we call “deescalate treatment” – give a little bit less of the medication and see if the outcomes are the same. And these are tests.

And so, the control arm, when there’s a randomized trial, is generally considered a standard of care. And then, the experimental arm is some alteration or deviation from that standard. But many of our trials are also single-arm trials where we’re testing some experimental regimen that all patients who participate in the trial will take part in, and it’s really important for the patient to ask, “What are the clinical trials available?” “What are the alternatives as far as standard treatments?” and “Are there other clinical trials other than the one that’s being discussed,” that might be appropriate for them?

Katherine:                  

Are there emerging approaches that patients should know about?   

Dr. Choudhury:        

Yeah. So, a lot of the emerging approaches are related to the genetics of the prostate cancer, as I just mentioned. And then, these different forms of radiation drugs – in addition to the ones that have already demonstrated survival advantage, there are other ones in the pipeline. And then, one thing that patients are very curious about is immune therapy approaches to prostate cancer.

Now, the standard kind of immune therapy drugs that are approved for lung cancer, and melanoma, and kidney cancers don’t tend to work particular well for prostate cancer. But there are many clinical trials trying to combine those kinds of drugs with other drugs or have newer approaches to immune therapies that patients with advanced cancer can certainly ask about.

Again, all of this is really experimental, and people need to understand that these sorts of approaches aren’t going to help everyone. But participating in a clinical trial allows our patients to contribute to knowledge that can be useful for other patients down the line.

Katherine:                  

Right. Now that we’ve delved into the types of treatment, let’s talk about what goes into deciding on an approach. What do you typically consider when determining the best treatment approach or option for a patient?

Dr. Choudhury:   

So, the starting point and the ending point is the patient themselves. And so, “the patient” means “What is their age? What is their fitness level? What are their activities? What’s the overall life expectancy? What are there other medical issues?” And then, we consider the cancer – “What is the stage? What is the grade? Where has it spread to, if it’s spread?”

And then, we try to incorporate all of those pieces with data – with clinical trials that have already been reported – and we have a lot of data in prostate cancer from patients who’ve participated in clinical trials, often randomized to one approach versus another, that gives us a sense of “What are the approaches that really benefit patients in terms of increasing likelihood of cure or prolonging the survival?”

And so, once we incorporate all of those things, we can come up with some treatment suggestions, and then patient preference on those suggestions obviously plays a very important role. But sometimes, we start down a line, and the patient is having troublesome side effects or it’s not working as well as we’d really hoped, and it’s important to be adaptive and to change things if things are not going down a route that we’d really hoped. So, that’s an ongoing conversation. It’s not that you make a treatment plan at the first visit and that’s the plan that’s stuck with throughout the whole course of things.

It’s a conversation at every visit on how things are going in terms of how the patients are doing and how the cancer is responding. And then, again, try to manage side effects as well as we can and adjust things if we need to along the way – and maybe switch to something that’s potentially going to be better tolerated or more effective, depending on what we see.

Katherine:                  

Right. It sounds like there are many factors to weigh when making this decision. I’d like to address a list of common concerns about treatment that we’ve heard from the community. So, I’d love to get your take on these. “There’s nothing that can be done about advanced prostate cancer.” Is that true?

Dr. Choudhury:           

So, that is very much untrue in that even patients with pretty advanced prostate cancer – even what we call “high-volume” kinds of prostate cancer – can live for years, and years, and years with appropriate treatments.

And the concern, oftentimes, is that the way that we get those years, and years, and years are with treatments that lower levels of testosterone, and I’m guessing that some of your questions coming up are related to concerns around side effects of treatment. But many of our patients tolerate those side effects pretty well and can live quite a good, and vigorous, and fulfilling life even with pretty advanced prostate cancer.

Katherine:                  

The next one: “Clinical trials are a last-resort treatment option.”

Dr. Choudhury:   

Yeah, so, as I’d mentioned before, clinical trials can be appropriate anywhere along the treatment trajectory of prostate cancer, and they are often being compared against standards which are often pretty good, but can we make them better? And certainly, participating in clinical trials isn’t for everyone, but for a long of our patients who are interested in seeing if an experimental approach might be beneficial to them or contributing some knowledge to patients down the line really do find trial participation to be quite fulfilling.

Katherine:                  

All right. The next one is: “Prostate cancer isn’t genetic, so I don’t need to be tested.” Is that the case?

Dr. Choudhury:        

No. So, it turns out that prostate cancer is actually one of our most heritable cancers. Somewhere between 40% and 50% of the predisposition to prostate cancer is actually genetic, or inherited based on family. So, the part that’s tricky and the part that is hard to maybe explain to patients is that a lot of that heritability is not encompassed in particular cancer genes in the way that many people are familiar with with breast and ovarian cancers, which are often linked to genes called “BRCA-1” and “BRCA-2.” So, a small subset of patients with prostate cancer do have alterations in that BRCA-2 gene, or BRCA-1, or ATM, or some other genes involved in breast and ovarian cancers.

And that does impact, potentially, their treatments down the line, and certainly is impactful for themselves, their siblings, their children as far as, potentially, screening recommendations for other cancers. But oftentimes, we’ll do one of these tests in patients who have a pretty extensive family history of prostate cancer, and they come out negative, and the patient is very confused because they clearly have a family history, but it’s because not all the risk of prostate cancer is actually encompassed in these gene tests that we run.

Katherine:                  

Ah, okay. The next concern is “I’ll lose all sexual function when I receive treatment.”

Dr. Choudhury:         

So, it very much depends exactly what the treatment is, and what’s being offered, and what the recovery is like.

So, for example, for patients who go into a prostatectomy and have very good erectile function, it’s not inevitable that you’ll lose your sexual functioning after a prostatectomy. There is a process – we kind of refer to it as “penile rehab” – of using medications like a Viagra or Sialis to restore the blood flow. You could use certain things like vacuum pump devices to restore the blood flow, and again, it’s not inevitable that people are going to lose their sexual functioning after a prostatectomy.

Even with testosterone suppression, while it plays a role in libido and erectile function, it’s not inevitable that people lose their libido and erectile function completely, even on these drugs. But certainly, more often than not, people will lose their erectile function on testosterone-lowering medications.

And so, there are alternative ways to get erections – involving, again, use of vacuum pump devices or injections that people can give themselves into the penis. People can have penile implant surgery to be able to get erections that way. And so, it’s really dependent on what the situation is.

Again, none of those more mechanical interventions are really ideal, but particularly when people have a defined course of treatment – for example, a surgery or radiation with a brief course of hormones – people can recover erectile function even after those sorts of interventions. And if they can’t, then we do have other approaches that will allow people to still be able to be sexually intimate with their partner after all of the treatments are completed.

Katherine:                  

Dr. Choudhury, one more concern: “My symptoms and side effects can’t be managed.”

Dr. Choudhury:           

Yeah. So, again, it’s very rare that we run into situations where there are side effects or symptoms that can’t be managed at all, in the sense that we have very effective medications against hot flashes, or moodiness, or pain, or –just fatigue. And certainly, lifestyle plays a big role in this. Also, a lot of the symptoms that people express are related to underlying depression and anxiety issues, and certainly, engaging with a mental health provider can be helpful in terms of managing those as well.

And then, there’s a lot of nonpharmacologic treatments – meaning nonmedication approaches that can provide people a lot of benefit in terms of their quality of life, and we have an integrative center called the Zakim Center for Integrative Medicine that helps with the relaxation techniques, and massage, and yoga, and acupuncture…

And people find different approaches to help manage these symptoms and side effects. And so, it’s very unusual where we run into a situation where the side effects are unbearable and unmanageable. Usually, we can manage them in some form of way that allow people to have, again, a good quality of life and a meaningful life, even on prostate cancer treatment.

Katherine:                  

Thank you, that’s really helpful. I’d like to talk about the term “shared decision making.” What does that mean to you, exactly?       

Dr. Choudhury:   

So, shared decision-making really means that when the physician conveys information to a patient, that the patient really understands what’s being said, and what, really, the alternatives are – and the real risks and the benefits of the different alternatives. And so, if a patient goes to see a surgeon and they say, “Well, we should take this out,” and there’s never really discussion of what the risks and benefits of the alternatives are –and the alternatives could be just watching, or radiation, or even more intensive treatment, then that’s not really shared decision making.

But what I think is not exactly shared decision making is when the patient is getting information from really non-knowledgeable or non-reputable sources and then starts to come up with conclusions based on hearsay or people trying to sell them a product that really hasn’t been FDA approved or really tested. And so, those are situations where when the information is really not good, then we can run into troubles with communications. But there are a lot of really excellent sources for patient information that’s available, and the Prostate Cancer Foundation is a really good source, and a lot of the academic prostate cancer centers are really great sources of information.

And so, being educated and asking good questions is really the best way for a patient to feel comfortable that they’re not missing anything and that they’re, again, having all the information that they need to make a good choice for themselves.

Katherine:                   

Do you have any advice to help patients speak up if they’re feeling like they’re not being heard?

Dr. Choudhury:           

Sure. So, I mean, there’s never any barrier to bringing up concerns with whoever that you’re seeing, and if you feel like whoever you’re talking to isn’t being receptive to those concerns, then certainly, second opinions are very useful. But if you see multiple doctors and they’re kind of telling you the same thing based on good evidence, then you probably have to take in what they’re saying, and process it, and see if it really does apply to your particular situation.

But any cancer doctor who really has your self-interest in mind will be very open to discussing the concerns that you have, so you should absolutely bring them up.

Katherine:                  

To close, Dr. Choudhury: What would you like to leave the audience with? Are you hopeful?

Dr. Choudhury:          

Yes. I’m actually incredibly hopeful. There’s been such a transformation in our diagnosis and management of prostate cancer compared to when I first started as an independent attending back in 2012. In the last ten years, there’s been so many new treatments that’ve been approved in the last decade and a lot of newer technologies available for staging patients – really finding where their prostate cancer is.

And newer technologies for treating the cancer wherever it is and in a really smart way. And so, we can really individualize our treatments for the patient that’s in front of us being a bit more intensive for people with higher-volume or higher-risk cancers, and actually potentially being able to back off treatment, and actually stopping some of the testosterone-lowering drugs in patients who are responding exceptionally well to the medications and the local treatments that we’re giving them.

And then, also, I’m really hopeful about the newer treatments and newer technologies that are on the horizon. We have newer – what we call “molecularly targeted agents.” We have new approaches involving immune therapies that are being tested – newer radiation approaches. And I feel like all of this put together allows us to, again, satisfy the goal of maintaining patients’ good, healthy, meaningful quality of life moving forward.

Katherine:                  

Yeah. Dr. Choudhury, thank you so much for taking the time to join us today.

Dr. Choudhury:           

Oh, you’re welcome. It’s so wonderful to have this opportunity.

Katherine:                  

And thank you to all of our partners. Please continue to send in your questions to Question@PowerfulPatients.org, and we’ll work to get them answered on future programs. To learn more about prostate cancer and to access tools to help you become a proactive patient, visit PowerfulPatients.org. I’m Katherine Banwell. Thanks for being with us today.

Which Emerging DLBCL Therapies Are Showing Promise?

Which Emerging DLBCL Therapies Are Showing Promise? from Patient Empowerment Network on Vimeo.

What’s next in diffuse large B-cell lymphoma (DLBCL) treatment? Dr. Justin Kline reviews developing research that could transform the future of DLBCL treatment.

Dr. Justin Kline is the Director of the Lymphoma Program at the University of Chicago Medicine. Learn more about Dr. Kline, here.

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Transcript:

Katherine:      

What about emerging therapies, Dr. Kline? What approaches are showing promise?

Dr. Kline:       

Well, I think probably in DLBCL, the biggest breakthrough, I don’t even know that I can call it emerging at this point, because it’s on the market, so to speak.

But I think it’s important to talk about, again, is CAR T-cell therapy, and this is a type of immune therapy where a person’s own immune cells called T-cells are taken from his or her bloodstream. And then using a special type of a virus, those T-cells are manipulated or engineered, that sounds better, to express on their surface something called a chimeric antigen receptor, which is somewhere between an antibody and a normal T-cell receptor. But anyhow, this chimeric antigen receptor confers or allows the T-cell to recognize a protein that’s expressed on the surface of B-cells, cancerous or otherwise, called CD19. And when that chimeric antigen or CAR antigen, excuse me, that CAR receptor expressing T-cell sees a lymphoma cell, it engages it and kills it, a pretty clever idea which has been in the works for decades now.

But CAR T-cell therapy has now been approved for not only DLBCL but many other types of non-Hodgkin lymphoma. And I think in the past decade, far and away, that’s the biggest breakthrough. There are other types of immunotherapy, probably most notably a type called bispecific immunotherapy, which is a pretty clever type of immune therapy where these specially engineered antibodies that are capable of binding or sticking to not only a person’s T-cell, a T-cell that’s already in his or her body, and a B-cell, a lymphoma cell that’s right next to that T-cell, sort of holds them together, and the part that binds the T-cell actually activates it, triggers it to kill the B-cell. And so there are a number of companies that have those bispecific therapies that are in development. I suspect a couple will be approved by the FDA, I would guess, in 2022.

These bispecific immunotherapies have been very effective, again, in DLBCL that’s come back, relapsed or refractory, as well as in other lymphomas. They do have some side effects that are similar to what we see in folks with CAR T-cell therapy. I won’t belabor what those are, but they are also very effective. There’ve been a number of drugs that, either immunotherapies or other types of therapies, that target that same CD19 protein on diffuse large B-cell lymphoma cells that have recently been approved by the FDA, either alone or in combination. Targeted therapies are always exciting. Although as compared with other lymphomas, these targeted therapies, many of which are oral, which are pills, have not been particularly effective in relapsed DLBCL.

So, I think that among the most exciting therapies are those that take advantage of our own immune systems to recognize and kill the lymphoma cells.

Emerging DLBCL Treatment Approaches

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What is next for DLBCL treatment? Dr. Jason Westin describes emerging DLBCL treatment approaches.

Dr. Jason Westin is the Director of Lymphoma Clinical Research in the Department of Lymphoma/Myeloma in the Division of Cancer Medicine at The University of Texas MD Anderson Cancer Center. Learn more about Dr. Westin, here.

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Transcript:

Katherine:                  

Yeah. You touched upon this earlier, Dr. Westin, but aren’t there emerging DLBCL approaches the patient should know about?

Dr. Westin:                 

Yes. Thankfully, there are many, many. We could spend several hours talking about lots of new therapies coming along. So, it’s a great answer to have. It’s an embarrassment of riches that we have for lots and lots of new therapies that appear quite promising in the early development stage.

In terms of those that have actually crossed over the finished line to be approved by the FDA, we have a handful of new therapies in the past few years that have been approved. Previously, we didn’t really have very many, but now there are multiple therapies that are approved by the FDA outside of a clinical trial, that are targeted treatments.

And those include antibody drug conjugates, basically an antibody like you make against an infection. However, this antibody has a chemotherapy warhead attached to the back of it. So, effectively, it’s a heatseeking missile that finds whatever target we want it to find – in this case, cancer cells – and delivers a high dose chemotherapy right to the bad guys, not to the good guys. There are also other immune therapies that we’ve seen than can be very powerful antibodies, plus immunomodulatory drugs. And we can talk about specific names of these if we’d like.

And then, lastly, there are other oral agents that are coming along that look very promising in terms of their ability to target the cancer cells more directly than growing cells.

Lastly, there’s a very new class of therapies not yet approved, but very promising. I mentioned this before. It’s something called a bispecific antibody. Bispecific – the word bicycle meaning two wheels. Bispecific is two specific antibodies. Basically, it’s an antibody that’s grabbing onto a cancer cell and grabbing onto an immune cell. “I’d like to introduce you guys. Why don’t you guys come in proximity and see if we can have a party.”

And it’s an idea here of trying to get the cancer cell to be attacked by the immune cell simply through this close proximity that occurs. Not yet approved. Looks very promising and I think probably will be approved for multiple different lymphoma types, including large B-cell, in the coming years.

An Expert Overview of DLBCL Treatment Approaches

An Expert Overview of DLBCL Treatment Approaches from Patient Empowerment Network on Vimeo.

How is Diffuse Large B-Cell Lymphoma (DLBCL) treated? Dr. Jason Westin provides an overview of current DLBCL approaches.

Dr. Jason Westin is the Director of Lymphoma Clinical Research in the Department of Lymphoma/Myeloma in the Division of Cancer Medicine at The University of Texas MD Anderson Cancer Center. Learn more about Dr. Westin, here.

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Transcript:

Katherine:                  

So, once it’s time to treat, then of course it’s time to think about treatment options. So, let’s walk through the types of therapy that are used today in DLBCL treatment. First of all, let’s talk about chemotherapy.

Dr. Westin:                 

Yeah. So, unfortunately, chemotherapy is still the – cornered the realm when it comes to DLBCL therapy, especially in the frontline setting. So, if a patient is newly diagnosed, no prior history of DLBCL, biopsy comes back and describes that’s what we’re looking at, the standard treatment, which has been around for about 40-plus years, is a combination of chemotherapy called CHOP, each letter representing a different medication. The antibody immunotherapy Rituxan, or rituximab, was added about 20 years ago.

So, the standard treatment for the past 20 years has been R-CHOP. And this has been tried and true. It’s been tested many, many times to try and improve this or to beat this. And R-CHOP has been less toxic than other alternatives or as good as other alternatives through many, many, many trials.

Now, late last year, in 2021, there was finally a randomized Phase III trial that showed, in addition of a targeted therapy in place of one of the chemotherapy drugs, had a slightly better progression free survival at two years. The targeted therapy here is a drug called polatuzumab. Polatuzumab is an FDA-approved therapy for large B-cell lymphoma patients in the US. Currently, as of the time we’re taping this, it’s approved for patients with relapsed disease. It’s not yet approved, based on this Phase III trial, but that may change in the coming months.

The improvement was modest. Around six percent of patients differing in terms of those who had progressed versus those who had not progressed in two years. So, not an earthquake, but R-CHOP or variations of R-CHOP are still a standard treatment for patients, outside of a clinical trial, of newly diagnosed diffuse large B-cell lymphoma.

Katherine:                  

And what about CAR T-cell therapy?

Dr. Westin:                 

The other treatment classes, the targeted therapies include CAR T-cell, or other antibody drug conjugates, immunotherapies, bispecific [antibodies] – there is a lot going on in new drugs and new drug development for DLBCL.

As of today, most of those therapies that are approved are looked at in patients that have already had a frontline chemotherapy approach and the cancer has come back. So, those are approved. But they’re either approved for patients in second line therapy – after having had one line, cancer comes back and now we’re in second line – or in third line therapy, two previous treatments and now we’re in third line treatment. There’s a lot of clinical trials, and I think we’ll talk maybe about clinical trials in a bit, that are exploring use of these targeted therapies, including CAR T-cells, including bispecific antibodies, including other targeted therapies as a potential for a frontline treatment.

But outside of a clinical trial, R-CHOP or versions of R-CHOP are still the standard today.

Katherine:                  

And what about stem cell transplant?

Dr. Westin:                 

Stem cell transplant’s been a second line therapy option, and it’s been the standard second line therapy for about 25 years. We’ll see this change in the coming years. There have recently been three randomized clinical trials comparing stem cell transplant versus CAR T-cell. All three of those reported out some information in late 2021, with two of them having final results, one of them having an interim report. And one of the final reports, one the interim reports, showed a significant improvement in chance of staying in remission in all the outcomes that were measured for CAR T-cell beating stem cell transplant.

So, we’re waiting to see how the health authorities view these clinical trials, if CAR T-cell potentially moves into second line treatment for a majority of patients instead of stem cell transplant. So, stem cell transplant’s been there, it’s tried and true. It has cured a significant portion of patients. However, CAR T-cells potentially are better and may be moving in the second line within the next year.

Emerging Waldenström Macroglobulinemia Treatment Approaches

Emerging Waldenström Macroglobulinemia Treatment Approaches from Patient Empowerment Network on Vimeo.

What Waldenström macroglobulinemia (WM) therapies are showing promise? Dr. Jorge Castillo of the Dana-Farber Cancer Institute discusses emerging research and advances in WM treatment.

Dr. Jorge Castillo is Clinical Director at the Bing Center for Waldenström Macroglobulinemia Dana-Farber Cancer Institute and Assistant Professor of Medicine at Harvard Medical School. Learn more about Dr. Castillo, here.

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Transcript:

Katherine:                  

Dr. Castillo, are there emerging approaches for treating Waldenstrom’s?

Dr. Castillo:               

Always. And that’s the beauty – that’s the second part of when we talked about clinical trials, right, we talked about clinical trials? Science continues, and we work very closely with an organization called the International Waldenstrom’s Foundation, and they support research all over the world for Waldenstrom’s.

So, their message is since the sun comes up until the sun comes down, there is someone, somewhere in the world working on Waldenstrom’s, and that’s true.

So, there’s a lot of science in the background, and that science helps us understand how the Waldenstrom’s cells behave, and therefore, we can then start targeting some things. That’s how BTK inhibitors came out. That’s how proteasome inhibitors came out. That’s how BCL-2 inhibitors came out. All these are the result of science, applied into the treatments. So, at my institution and many other institutions in the country and outside of the country, there are newer treatments being tried all the time.

We have now – we are looking into combining BTK inhibitors with other agents. Germany is doing a number of different studies. Canada is doing a number of different studies. We are doing some studies in the United States as well, combining chemotherapy and PIs with the BTK inhibitors. We’re doing a study in my institution combining BTK inhibitors with BCL-2 inhibitors. So, and the idea is to try to create a more powerful agent or regimen and hopefully maybe not give patients indefinite treatments, more like fixed duration treatments.

So, I think that’s where it’s coming. It’s coming maybe double, triple combinations, fixed duration treatments. That’s what is coming in terms of that aspect of the research. And then, we do have newer compounds coming out.

We do have now some concepts in what we call immunotherapy, right? We think about antibodies.

We think about bispecific T-cell engagers. CAR-T cells, so all that is actually up and coming in Waldenstrom’s. There are actual clinical trials being done today evaluating all those different treatments for patients with Waldenstrom’s.

So, I think the future is really bright. I’m really optimistic, to be honest with you about the treatment of patients with Waldenstrom’s. Obviously, what we need, what we want, is cure of the disease. And again, we can think about cure in two different ways. We can think about the classic definition of cure in which we treat patients, the disease goes away, you stop treatments, and the disease never comes back, right? That’s one way of looking at cure.

The other way of looking at cure is you treat the disease, the disease is in a remission, you continue treating the patient, and then the patient basically dies of other reasons, right? That is a functional cure. So, I think we’re closer to the latter, much more than the former, but the efforts to continue developing new treatments, it’s not stopping anytime soon.

Katherine:                  

No, because we’re always constantly moving forward, having to find new treatments, definitely.

Why Patients Should Speak Up About WM Symptoms and Side Effects

Why Patients Should Speak Up About WM Symptoms and Side Effects from Patient Empowerment Network on Vimeo.

Is Waldenström macroglobulinemia (WM) causing fatigue? Dr. Jorge Castillo shares why WM patients should share any symptoms and side effects they experience with their healthcare team.

Dr. Jorge Castillo is Clinical Director at the Bing Center for Waldenström Macroglobulinemia Dana-Farber Cancer Institute and Assistant Professor of Medicine at Harvard Medical School. Learn more about Dr. Castillo, here.

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Transcript:

Katherine:                  

Fatigue seems to be very common among Waldenstrom’s patients. Here’s a question that we received before the program. Kasey asks, “Why do I feel so tired all the time? Is there anything that can be done about it?

Dr. Castillo:               

That’s a great question, and as I said before and basically kind of summarizing what I put together, I mean, there are many patients why a symptom with Waldenstrom’s could be fatigued. One of them is they could be anemic. The other one, they could have some hyperviscosity symptoms causing some fatigue, maybe some inflammation in the body because of the Waldenstrom’s, but maybe there are other reasons why patients can be fatigued.

And if you go out there in the streets and you start asking people, “Are you tired?” 80 percent of Americans are going to be tired. I’m not trying to minimize the symptoms of the patients. What I’m trying to say is we need to be very careful at understanding what the relation of the fatigue is with the disease. We need to be convinced that there is a relation there.

If that happened in my clinic – for example, a patient comes to see me, and they are fatigued; their hemoglobin is 14, which is normal; their IgM is about 1,000, which is not supposed to cause hyperviscosity. So, I do not know really in that context if the Waldenstrom’s is driving the fatigue or not.

Katherine:                  

Or if it’s something else.

Dr. Castillo:               

Exactly. So, we need to make sure that the patient doesn’t have any iron deficiency, that the patient doesn’t have any thyroid problems, that the testosterone problems are okay, that there’s no sleep disturbances, that there’s no depression. So, there’s so many different other things that we need to make sure are not there before we mount into that. Because if someone is fatigued with a hemoglobin of 8, which is very low, with my treatments, if I make that 8 14, I know the fatigue is going to get better. But if the patient is fatigued with a hemoglobin of 14, which I am not going to improve with my treatments, then how confident do I feel that I’m going to improve the patient’s quality of life with a potentially dangerous treatment?

So, we talked about already secondary leukemias, neuropathy, other problems that the patient can have with the treatments or because of the treatments.

So, we need to balance that out and understand that the potential benefit has to be higher than the potential risk, and that’s why the personalization comes into play. So, fatigue is a big issue, and we try to take a very systematic approach about that, you know, ruling out other conditions, making sure that we understand its relation with the disease before recommending treatment just for fatigue.

Katherine:                  

Yeah. This is one side effect that is so important for patients to share with their healthcare team, right?

Dr. Castillo:               

Oh, absolutely.

Katherine:                  

So that their healthcare team can know how to treat them.

Dr. Castillo:               

That’s right. And again, there are so many interventions that are not medications that could be done in these type of situations, right? Meditation, mindfulness. There are so many other approaches to try to help in these type of situations, changing a little bit sometimes the perspective, trying to be a little bit more on the positive thinking, right?

So, there are so many different ways outside of pharmacological approaches that we can use to try to improve our patients’ quality of life.

Katherine:                  

Yeah. Knowing that one has an incurable disease can be very stressful, right? Knowing that you have to live with this.

Dr. Castillo:               

That’s absolutely correct, and again, what I’ve seen happening in some of my patients is every little thing that happens to them, they do not know if it’s because of the disease or not.

Katherine:                  

Oh, yeah.

Dr. Castillo:               

“So, I have a twitch there. Oh, it’s due to Waldenstrom’s. Do I need to be treated because of that twitch?” And that, I understand it. Well, I try to understand it. I’m not in that same situation, so I cannot understand it completely. But I try to understand how if you don’t trust your body anymore, right? I mean, you have a disease, and you don’t trust your body anymore, then how you trust all these little symptoms here and there?

So, in my conversations with my patients, I discuss these things openly and that you’re going to have a lot of different symptoms here and there. Most of them probably are not going to be related to the disease, but if some of them are concerning enough to you in terms of your activities, in terms of eating, drinking, sleeping, social life, sexual life, you know, working life, then let me know, and then we will be happy to investigate those because anything can happen to anybody.

So, you can have other problems. Waldenstrom’s doesn’t protect you from anything, so, and it’s always important to discuss this with patients and pay attention to the patients, not dismiss their symptoms, think about them with them, talk about them with the patients to try to understand how these are affecting them.

How Can Advanced Non-Melanoma Skin Cancer Patients Participate in Their Care?

How Can Advanced Non-Melanoma Skin Cancer Patients Participate in Their Care? from Patient Empowerment Network on Vimeo.

Dr. Vernon Sondak shares encouraging advice for patients to speak up and be active participants in their advanced non-melanoma skin cancer care and treatment decisions.

Dr. Vernon Sondak is the Chair of the Department of Cutaneous Oncology at H. Lee Moffitt Cancer Center and Research Institute. Learn more about Dr. Sondak, here.
 

Katherine:                  

Dr. Sondak, do you think a patient should consider a second opinion or consulting a specialist? If so, what would you say to them, to make them feel comfortable to do that?

Dr. Sondak:                

So, I would remind everyone – as we said earlier – advanced skin cancer is not something you can pass off. “Oh, it’s just skin cancer. Everybody gets skin cancer. It’s just minor. Just put a band aid on it.” I’ve seen people who’ve neglected these cancers for a long time, thinking they weren’t serious, or thinking that the treatments were gonna be too awful, too disfiguring, or too toxic. That’s just not the case anymore.

Everyone with advanced skin cancers should have cutting edge appropriate treatment. Cutting edge doesn’t always mean brand new. It might mean the same surgery we’ve been doing for many years. Just done properly and appropriately for that patient.

So, this is a kind of cancer that usually should be treated by very experienced teams. Especially when drug treatment is needed, often when radiation is needed, and certainly when major surgery is needed. Not just the use of the drugs, but the sequence. Which drug first? Which drug second? When is surgery appropriate? When do we do the radiation?

These are sophisticated decisions, and every patient is different. So, we strongly encourage people to go to a center that has a whole panel of different specialists. And they work and talk to each other. They work with each other, work together, talk to each other, and come up with a plan for each patient. If you just go to one doctor, sometimes – an old saying – when all you have is a hammer, everything looks like a nail. There are times when somebody says, “Well, I can do radiation.” Surgeon says, “I can do surgery.” Oncologist says, “I can do chemo, or targeted therapy, or immunotherapy.”

We want them all together, saying “Yeah, but what should we do for this patient?” That’s the goal that we’re striving for. That’s when you’re gonna be the most likely to get the most successful outcome.

Katherine:                  

Dr. Sondak, what would you like to leave patients with? Are you hopeful?

Dr. Sondak:                

We have seen the most dramatic progress in the treatment of these forms of cancer of the skin – melanoma, merkel cell cancer. basal and squamous cell cancers – in my lifetime. Progress I never ever thought I would see. We are not curing everybody, but we are curing a lot more people than we used to.

Yet I still see things about these forms of cancer on the internet that say, “Oh, this is really aggressive. This needs to be treated right away. Don’t wait. Don’t make me go get a second opinion. Have somebody deal with it.”

No. Time out. First thing, it’s better to do it right than to do it right away. Second thing, you don’t get a second chance to make a first impression, and if you go down the wrong treatment path, sometimes you can’t undo that. There is always time to stop and ask, “Am I doing the right thing? Is there somebody who really specializes in this that I should be seeing?”

But the most important advice at all, of course, is you’ve got to get the diagnosis made in the first place. So, that means you have to be willing to go to the doctor, to the dermatologist, to say, “Hey, this doesn’t seem right. It’s just not healing. It just keeps getting worse. What’s going on?”, and then have to be willing to follow up and go through treatments.

If you do, we are extremely optimistic. We are seeing progress, responses, cures that we never thought possible. So, there’s a lot of reason to be optimistic. It’s not always easy. There are plenty of side effects of all the treatments that we talked about. Including surgery, radiation, and all the drugs. But it’s not like it was even 10 years ago. Huge progress for people at any age. So, really, we really are optimistic.